NHS Digital Data Release Register - reformatted
The Nuffield Trust For Research And Policy Studies In Health Services projects
- QualityWatch
- Understanding and improving healthcare quality and health outcomes for children and young people
- Rapid Service Evaluation (RSET)
- Nuffield Trust Primary DSA
- Prisoner health: Understanding prisoners healthcare needs, their use of healthcare services and quality of care received
- Retrospective analysis of the impact of Royal Voluntary Service Home from Hospital scheme on NHS hospital use.
- The care of frail older people, and the role of the Comprehensive Geriatric Assessment (Refs: NIC-383324-D6B8T, previously HESR019)
- Project 8
479 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
QualityWatch — DARS-NIC-336478-Z7Q9F
Type of data: information not disclosed for TRE projects
Opt outs honoured: Anonymised - ICO Code Compliant (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(2)(b)(ii)
Purposes: No (Research)
Sensitive: Non-Sensitive
When:DSA runs 2018-03-01 — 2021-02-28
Access method: One-Off
Data-controller type: THE NUFFIELD TRUST FOR RESEARCH AND POLICY STUDIES IN HEALTH SERVICES
Sublicensing allowed: No
Datasets:
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Outpatients
- Hospital Episode Statistics Accident and Emergency (HES A and E)
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Hospital Episode Statistics Outpatients (HES OP)
Objectives:
The Nuffield Trust is an independent health research charity overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics. The Trust's vision is to help achieve a high quality health and social care system that improves the health and care of people in the UK by providing evidence-based research and policy analysis and informing and generating debate. The Nuffield Trust undertakes work for the public good and within a research governance framework. The Nuffield Trust requires access to data from NHS Digital to achieve these legitimate interests.
The Nuffield Trust wishes to use these data to continue the QualityWatch project - the objective of which is to monitor changes in the quality of care delivered by the NHS over the next few years.
QualityWatch (http://www.qualitywatch.org.uk/) is a major research programme from the Health Foundation and the Nuffield Trust that aims to provide independent scrutiny of the quality of health and social care delivered to patients and service users.
QualityWatch launched in 2013, in the wake of high-profile investigations into major failures of care, including the Mid Staffordshire NHS Foundation Trust Public Inquiry and Professor Sir Bruce Keoghs review of high mortality rates at 14 NHS trusts. At the outset of the programme, it was anticipated that the quality of health and social care services would come under increasing pressure during a period expected to be characterised by severe spending constraint; continuing growth in demand arising from increasing levels of morbidity in an ageing population; and the implementation of the major policy reforms enacted by the coalition government.
QualityWatch was originally conceived as a five-year programme to help those working in health and social care to identify priority areas for improvement. The programme is primarily concerned with monitoring and commenting on what is happening to quality of care, with the aim of inciting action and improvement by presenting novel and dispassionate analysis, free from the constraints and potential conflicts of a policy agenda. Secondary objectives are to contribute to the development of new methods of measuring and assessing quality, and to provide a platform for a diverse range of perspectives on the quality of health and social care services.
QualityWatch was intended to provide an independent picture of the quality of care, to supplement and inform the work of other initiatives and the statutory national bodies. It has primarily focused on the NHS and social care in England, but also draws on evidence from the four countries of the UK and health systems in other comparable countries around the world. The programme now tracks over 300 indicators of health and social care quality via a public website, has provided in-depth analysis of a number of topics and has produced four annual statements on the overall state of quality.
QualityWatch has received additional funding from NIHR to continue the project, planned to run until at least 2020 and will deliver similar outputs in terms of a website, summarised quality metrics, briefings, data blogs and data visualisations to achieve its goals using evidence and data such as that derived from HES where appropriate.
Specifically on the use of HES, analysis undertaken as part of the QualityWatch project will involve examination of patterns of hospital activity by area or by provider, developing comparative analyses and standardising for a range of episode level, or patient level variables - such as age, the presence of a long term conditions, prior patterns of use. Such analyses require complex processing for fair comparisons and to capture activity for whole populations - something that only nationally collated data can provide.
The remit of the QualityWatch programme is to provide independent, evidence based monitoring of quality. The key indicators span six domains of quality (Effectiveness, Equity, Patient experience, Capacity, Safety and Access), across all aspects of health and social care (for example, primary care, community, acute, mental health, social care).
The Nuffield Trust meet quarterly with the Health Foundation to review the programme, and draw on clinical and academic expertise on a topic by topic basis to review the indicators. The scope of indicators is under constant review and the indicators are updated to address emerging quality and safety issues, and to address gaps in the coverage. Examples of development areas are further indicators for: mental health building on previous work on disparity in use of services between patients with mental health conditions compared to physical conditions; maternity services, and improving safety indicators to include measures relating to sepsis and deterioration. As an example, for the safety domain, the Nuffield Trust consult with are the NHS Improvement Patient Safety team and the central Patient Safety Measurement Unit who support the Maternal and Neonatal Safety Programme. The Nuffield Trust also plan to review measures of quality at a system level, in response to the NHS England drive towards integrated care. In addition to development of indicators and regular updating of these, the Nuffield Trust also undertake analysis on topical issues, to produced data briefings, or provide additional analysis for topics covered in regular indicator updates. Topic issues are identified through the Nuffield Trusts in depth knowledge of the health policy, analysis of the data monitored from the Health Foundation, and in response to issues identified by other stakeholders or academic publications. As an example, the Nuffield Trust has recently undertaken an analysis of emergency readmissions data (up to 2016/17), in response to analysis undertaken by Health Watch, and addressing issues raised by the National Audit Office.
The impact of some interventions and policy changes which impact on health outcomes and service utilisation can develop over a considerable period of time. One of the areas which the Nuffield Trust are planning to explore further in QualityWatch is equity of service provision, and how this has been impacted by decreasing access to services in this decade. There is evidence that equity in a number of aspects of care, for example elective joint replacement, improved with rising intervention rates during the previous decade. In order to assess the impact of increased waiting times, a longer historical perspective is required, and for this reason, data going back to 1999/2000 (2 additional years) is requested.
The Nuffield Trust will not share patient level NHS Digital data with The Health Foundation. Any data shared will be aggregate data with all small numbers suppressed in line with the HES analysis guide.
Yielded Benefits:
As an indication of the impact the original QualityWatch project has achieved, the Nuffield Trust can point to the fact that there are many examples of QualityWatch work being cited in parliamentary debates and select committees as well as used by national bodies (such as NHS England), by local providers of care and receiving coverage in many national/local media outlets. The benefits of this work are seen in terms of independently providing a picture of the quality of health and social care, by providing analyses to inform decisions made by healthcare commissioners and providers, when thinking about the types of services needed to deliver benefits to patients, as well as by policy makers at a national level. A number of research studies as part of the QualityWatch project, using NHS data, which have been widely used to inform decision making and debate in health and social care. The Nuffield Trust publishes these reports on the QualityWatch website and in peer reviewed journals where appropriate. Two examples are provided below: The Nuffield Trust report "Focus on: Mental ill health and hospital use" published in October 2015 described how people with mental ill health used hospital services and in particular highlighted the need to better support their physical health needs. This report was cited in NHS England's implementing the Five Year Forward View for Mental Health. Analysis provided in the Nuffield Trust report was used to estimate possible savings in relation to physical health screenings and interventions for people with severe mental illness. https://www.england.nhs.uk/wp-content/uploads/2016/07/fyfv-mh.pdf The methods identified in this report have been replicated by several organisations who wish to repeat the methodology locally, in particular, the West Midlands Commissioning Support Unit reports that they have remodelled their approach to the physical care of people with mental health problems as a direct result of the QualityWatch publication on this topic. Results of this work were presented at an expert roundtable on mental health issues in Summer 2015 convened by the then Shadow Health Secretary Diane Abbott to brief her and the Labour frontbench health team on this area of policy. In addition to this there was a campaign launched calling for an increase in funding for mental health services, where the news report quoted the findings from this report (in November 2015). http://www.bbc.co.uk/news/health-34676799 Results have also been presented a number of national and international conferences; most recently at the 16th International Conference on Integrated Care, Barcelona. The Nuffield Trust report "Focus on: Allied Health Professionals: can we measure quality of care?" published in September 2014 emphasised the need for better data and information about Allied Health Professionals (AHP) to understand more about the quality of the care they deliver. This report was followed up with a round table event with key members of the AHP and health data community with the aim of forming a plan to improve data collection in this area of the workforce. There was a written question in parliament in response to recommendations made in this report. http://www.parliament.uk/business/publications/written-questions-answers-statements/written- question/Commons/2014-12-01/216697/ This work was taken forward and contributed to recommendations made in NHS England's "Allied Health Professions into Action Using Allied Health Professionals to transform health, care and wellbeing". https://www.england.nhs.uk/wp- content/uploads/2017/01/ahp-action-transform-hlth.pdf Whilst it is hard to draw causality, Nuffield have also been made aware of NHS England undertaking work to drive improvements in the quality of physical health care provided by mental health providers to service users with severe and enduring mental ill health and will be developing a national clinical audit to underpin this under the National Mental Health CQUIN scheme for 2016/17. The planned outputs of the QualityWatch project will be made freely available on the Nuffield Trust or QualityWatch websites, or published in recognised research Journals. Where the Nuffield Trust have developed any potentially useful tools for providers or commissioners these will be made freely available for use, or for further development by others.
Expected Benefits:
QualityWatch will continue to monitor changes in the quality of care delivered by the NHS over the next few years.
The key aims of QualityWatch continue from the original project:
Provide an authoritative, independent and contextualised analysis on the quality of health and social care over time, while at the same time augmenting and informing other statutory and non-statutory national initiatives
Highlight where there are clear and compelling gaps between existing standards of care and what is possible, in order to prompt action to improve quality
Help develop the way quality of care is measured.
A review of how QualityWatch can better achieve these aims (along with a more general sense-making goal to inform the public, practitioners and policymakers of trends in quality measures) will be conducted in the first few months of 2018. Inter alia, this will include a number of measurable benefits/activities and impacts. The nature of the programme means that linking planned outputs directly to benefits to the health and social care system, its providers and patients/clients a difficult exercise. However, there are intermediate measures the Trust are likely to use such as web traffic, downloads and citations etc. Measuring the impact of the new programme will also be an explicit part of the contract agreement with the funders, The Health Foundation.
Outputs:
Planned outputs from the Qualitywatch programme include:
Up to 8 briefings per year on various topical quality issues as described above and determined during the programme, varying from the general (such as the state of quality in mental health services) to the specific (such as the use of and access to emergency departments by children). The output briefings will be written reports made publicly available free of charge on the www.qualitywatch.org.uk/ or www.nuffieldtrust.org.uk/ websites*.
*The Trust are aiming to transfer the existing QualityWatch content onto the Nuffield Trust main website but all content will be branded under the QualityWatch banner.
Up to 6 comment/data blogs per year focused on topical issues in quality of care
2/3 data visualisations of quality measures per year
Regular monthly updates of quality indicators, creation of charts and associated commentary for the QualityWatch website
Any outputs drawing on HES data will be aggregate with small number suppressed in line with the HES Analysis Guide.
Processing:
The Nuffield Trust analyses patterns of hospital activity by area or by provider, developing comparative analyses and standardising for a range of episode level, or patient level variables such as age, the presence of a long terms condition, prior patterns of use. Such analyses require complex processing for fair comparisons and to capture activity for whole populations something that only nationally collated data can provide.
Under this Data Sharing Agreement, for the purpose of QualityWatch, the Nuffield Trust is permitted to reuse appropriately minimised subsets of HES data supplied to the Nuffield Trust under a separate Data Sharing Agreement (ref: DARS-NIC-384572-J7P6Y). For the collective purposes of QualityWatch, the use of HES data from 1999/2000 through to 2020/21 is needed although the minimum amount of years and data will be used for each type of analysis on an individual basis.
The data requested and already disseminated will be accessed and processed by substantive employees of the Nuffield Trust only.
Additional note third parties:
The Nuffield Trust are not seeking permission for any third parties to access these data, even where these third parties are study partners. The use of this data will be limited to Nuffield Trust for the purpose outlined above only. Data published or provided to third parties will be limited to aggregated data, at area, organisational or cohort-level all with small numbers suppressed in line with HES analysis guide.
The Nuffield Trust will perform statistical analysis using statistical software including SAS, R and stata. At all times, data remains on the Trusts local IT systems, in accordance with our ISO27001 scope. The Nuffield Trust uses on premise system with licenced software for SAS. R is an open-source application. Additionally, the physical server where the Trust stores and performs analysis, does not have internet access as it is blocked at the perimeter.
Nuffield Trust uses the services of a UK based external IT Support company to provide support for its Hardware and systems. While Wavex have the ability to add/delete/modify user account, Nuffield Trust have enforced a contractual restriction to Wavex in respect of accessing the secure environment and the Nuffield Trust has applied real-time alerting system to changes within Active Directory. Any changes made by Wavex are reviewed. Additionally, Nuffield Trust has applied technical Deny All restriction for the account used by Wavex. This restricts them from accessing any data (including NHSD data) within the secure environment.
All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by Personnel (as defined within the Data Sharing Framework Contract - i.e. employees, agents and contractors of the Data Recipient who may have access to that data).
The Data will only be used for the purposes described in this Agreement.
Understanding and improving healthcare quality and health outcomes for children and young people — DARS-NIC-204228-D8J4D
Type of data: information not disclosed for TRE projects
Opt outs honoured: Anonymised - ICO Code Compliant (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(2)(b)(ii)
Purposes: No (Research)
Sensitive: Non-Sensitive
When:DSA runs 2018-09-10 — 2021-09-09
Access method: Ongoing
Data-controller type: THE NUFFIELD TRUST FOR RESEARCH AND POLICY STUDIES IN HEALTH SERVICES
Sublicensing allowed: No
Datasets:
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Outpatients
- Hospital Episode Statistics Accident and Emergency (HES A and E)
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Hospital Episode Statistics Outpatients (HES OP)
Objectives:
The Nuffield Trust for Research and Policy Studies in Health Services (The Nuffield Trust) is an independent health research charity overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics. The Nuffield Trust aim to improve the quality of health care that improves the health of people in the UK by providing evidence-based research and policy analysis and informing and generating debate. The Nuffield Trust undertakes work for the public good and within a research governance framework. These are the Nuffield Trusts legitimate interests which provide a lawful basis for processing personal data under the General Data Protection Regulation (GDPR).
In everything the Nuffield Trust do, they strive to be:
independent and free from vested interests;
rigorous, robust and evidence-based in the work they undertake;
relevant, supportive but also challenging when they need to be;
open and engaging with all those they come into contact with;
an organisation that makes a difference to the quality of policy-making and practice in the UK.
The Nuffield Trust has decided to embark on a programme of work focusing on Children and Young People (CYP). This programme is compatible with and supports the legitimate interests above. There are five main drivers behind why the Nuffield Trust thinks that this area is an important area of work that requires attention.
1. Despite long term improvements, recent changes to the UKs and Englands trajectories and comparative positions internationally, in outcome and quality indicators, are giving cause for concern. There have also been increases in emergency (hospital) care use by CYP - including care for conditions where there is a reasonable expectation that they can be managed in the community
2. There has been a long term lack of policy focus on the majority of services for CYP , with renewed calls for making CYP health and healthcare a priority as it struggles for visibility against:
other priorities within the NHS (e.g. tackling system wide pressures and finances)
other age groups in all-age strategies (e.g. Five Year Forward View), which is particularly pertinent when you consider that when asked about the same thing, the views of CYP patients can differ from those of their parents/carers and of adult patients
wider societal priorities (e.g. Brexit and security)
3. There is an impact of CYPs socioeconomic backgrounds on their hospital care use (including care for conditions where theres a reasonable expectation that they can be managed in the community) and outcomes, with a widening in inequalities in some areas of CYP health, such as diabetes.
4. At a time when the levels of poverty in children are also concerning as:
The levels of child poverty is high;
There has been a deterioration in child poverty trends in recent years;
With poor projections for the future child poverty levels;
- the proportion of children living in absolute poverty - the proportion of children living in relative poverty is projected to further increase
- even in working households, children living in absolute poverty is projected to increase over the same time period - inequalities in absolute poverty rates between the least and most deprived children will widen even further
5. Child health has changed over the last 45 years mortality data show an epidemiological transition away from acute infectious illness towards chronic long-term conditions. But the way health care services are provided is still heavily hospital focused and reactive.
The programme aims to:
1. Help develop the evidence base on what the issues are in CYP health, healthcare services, health systems and the wider context for CYP outside of these when it impacts on CYPs health and outcomes.
2. To help develop the evidence base on the means of addressing these issues by national policy and decisions makers, local policy and decisions makers in commissioners and providers of health and other services, and individual professionals working with CYP. This will have a particular focus on what healthcare services and systems can do, but will also address how the different parts of the system that CYP come into contact with can work together to improve outcomes.
3. To provide thought leadership on the linkage (area, provider and individual person level) and analysis of information in relation to CYP.
4. To help maintain a focus on research and policy to improve quality of care, health and wellbeing for CYP.
Through:
1. Summarising and pulling together evidence from published and grey literature (i.e. material that is produced for non-commercial purposes) as well as opinions from experts on Children and Young People.
2. Describing, where it has not been done before, what is happening in Children and Young Peoples health, in their healthcare services and in the wider context for Children and Young People when it impacts on their health and other outcomes
3. Investigating key determinants of poor health, developmental and well-being outcomes among CYP in the UK, with a particular focus on poverty, inequalities, development and education, basic needs (e.g. housing and food), individual behaviours and health services.
4. Studying the potential impact and cost of different interventions to address these determinants, in order to inform policy and decision makers about the benefits and implications of action/inaction for CYPs health and outcomes at a national and local level (including commissioners and providers of healthcare services and other services) and to help them understand how they can move towards higher value care, with higher quality, greater efficiency and coordination.
5. Scrutinising relevant policy developments and findings by others and to comment on their implications for CYPs health and outcomes.
6. Generating networks of organisations and people relevant to shaping the direction of healthcare systems and services in relation to CYPs health and outcomes.
Health services are one important determinant of CYP health outcomes and healthcare activity data from Hospital Episode Statistics (HES), such as emergency department attendances, admissions and re-admissions, are important (though imperfect) proxies for health outcomes. Previous work undertaken by the Nuffield Trust through the use of HES data has shown the importance of Local Authority (LA) variation and inequalities in relation to CYP health outcomes. The Nuffield Trust need to continue to deepen and extend this work further to look at interventions and policy implications.
This Agreement permits the Nuffield Trust to use the data for the purposes of projects undertaken within the CYP programme which meet the above description and which are conceived, planned, approved and initiated through the following process.
1. Projects intended to meet the programmes aims will be conceived and planned through an iterative process involving the Programme Director and Programme Lead with appropriate input from the Data Protection Officer (DPO). The Programme Director and Programme Lead will ensure that:
Projects have a clearly defined objectives and operational plans;
The aims of projects align with at least one of the programmes aims (as stated above) all projects must clearly and logically fall within the scope of having one or more of the 4 aims listed and achieving those aims through one or more of the 6 methods listed above;
In each case, the use of the HES data is necessary and proportionate to the purpose of the project and that the minimum amount of data necessary is used this will include consideration of the necessity for use of each individual HES dataset; the number of years of data; the sizes of any cohorts or control cohorts derived from the data, and the inclusion and exclusion criteria (such as presence of specific diagnostic or procedure codes);
Appropriate safeguards are in place to protect confidentiality; minimise risks of re-identification and use of excessive data beyond necessity
A Data Protection Impact Assessment (DPIA) is completed at strategic level and covers all associated projects. A Legitimate Interest Assessment (LIA) will be completed internally for each research project and signed off by the Data Protection Officer (DPO).
2. A project management template will be completed and submitted to the Nuffield Trust Project Planning Committee (PPC). This excel template serves a wider purpose than just planning and remains valid throughout a projects life, serving as the central control document in the management and delivery of the project. The PPC is chaired by the Director of Communications and consisting of the chief Executive, Director of Research, Director of Policy, Senior Fellow, Senior Policy Analyst and other representatives from Research, Policy and Communications. It provides a forum for the discussion, in depth and expert assessment and approval of project ideas, drawing on senior level expertise and knowledge across the Trust.
The committee is responsible for receiving assurance that all projects:
Align to the strategic aims of the Trust;
Are methodologically sound; and
Draw fully on the expertise within the Trust including making connections to other related work.
The Committee will approve or recommend the approval of projects in line with the internally approved schedule of management authority and responsibility.
3. The individual or team within Nuffield Trust which will carry out the project will define and be bound by an operational plan detailing what data is permitted for use in the project and how it shall be processed.
For the purpose of illustration, the following are examples of projects under the CYP programme which have already been approved by the PPC:
Investigating variation to help understand the rise in emergency admissions for the under 5s. Following on from the Nuffield Trusts previous report Emergency hospital care for children and young people, which found that among CYP (0-24 years), infants (under 1s) are the most likely to have an emergency admission and that over a ten-year period they experienced the largest increase in emergency admissions (23 per cent). Those aged between 1 and 4 had the next highest emergency admission rate and saw an 11 per cent increase over the period. The reasons for this increase have been speculated upon but no evidence provided. Looking at variation using HES data could help to further explain this rise in emergency admissions and offer some achievable solutions.
Advancing understanding of the causes of poor child health, developmental and well-being outcomes (with a particular focus on early years (conception - 5 years)) in the UK and inform strategies to improve these outcomes. Part of this project will be to describe the trends in child health outcomes (e.g. emergency admissions, readmissions), through the use of HES, and to try and get a better understanding of which population, community and service characteristics (e.g. by looking aggregate level NHS trust and Local Authority (LA) - at different factors such as age, conditions and deprivation) are associated with better or worse child health outcomes. With further analysis on how they relate to different social determinants that are potentially amenable to interventions.
Though the data requirements per project will vary, for the purpose of the programme, the Nuffield Trust will utilise up to 15 years of HES (covering accident and emergency, admitted patient care and outpatients) from 2005/06 to 2020/21. This period of data will enable the programme to carry out longitudinal analysis looking at variations in hospital activity and CYP health outcomes. Following on from the Nuffield Trusts definition of CYP as being a person under the age of 25, data analysed will be limited to individuals who are 0-25 years old. The Nuffield Trust requires one year above the age of 24 to allow for a year follow up on outcomes such as readmissions after events that occurred while they were still under the age of 25.
The time frame for undertaking each project will vary according to project resource, extent of the research and data analysis required. This is always considered as part of the Project Planning Committee's review and approved based upon the detail of each individual project.
Some projects under the programme will be funded by the Nuffield Trust but funding is also being sought from other partners including the Nuffield Foundation, NIHR and the Health Foundation but may not be limited to these organisations. Funders will take both the forms of partners in collaborative working, as well as commissioners only. The Nuffield Trust will not be reliant on securing funding from external partners to complete this research. However, the Nuffield Trust will need to recognise the contribution of any external partner in their outputs.
The Nuffield Trust will always remain the sole Data Controller. However, where appropriate, they will draw on additional expertise in the subject matter from other organisations such as the Royal Colleges, universities, charities and other bodies who will contribute to the interpretation of the results, joining together experience from across the Healthcare sector. Results may be shared in aggregate form in accordance with the Nuffield Trust's Research Governance framework, with small numbers suppressed. The data accessed through this Agreement will be managed by the Nuffield Trust, and will not be shared any other third-parties.
The Nuffield Trust will submit an annual report to NHS Digital summarising the projects within the scope of this Agreement that are planned, in progress and completed at that time. Whenever this Data Sharing Agreement is extended and/or reviewed this section will be updated to reflect the latest outputs, expected benefits and any yielded benefits from this programme.
Outputs:
The Nuffield Trust will produce summative findings (shared locally and nationally, including academic publications).
The Nuffield Trust will develop a communication strategy for the overall programme and each project in collaboration with relevant partners & end users, including stakeholder dissemination list; social media strategy; bespoke events; conference presentations; open-access journal articles; sharing findings with trade press, such as the Health Service Journal and National Health Executive.
The Nuffield Trust will use their extensive communications facilities & networks for dissemination (including professionals in the fields of media relations, public affairs, digital communications and event management), working with partner communications teams, to maximise the impact of findings.
The Trust will review and evaluate the impact of their communications activity and refine their approach for each new output.
All outputs will be aggregate with small number suppressed in line with the HES Analysis Guide.
Anticipated dates of known study reports are listed. All may also include presentational web material (for example slideshows and blog posts), in addition to presentations given in person at relevant research or policy conferences, etc.
1. Variations in emergency admissions for the under 5s.
- Report planned Summer/Autumn 2019
2. Advancing understanding of the causes of poor child health, developmental and well-being outcomes (with a particular focus on early years (conception - 5 years)).
- Initial findings are planned to be presented at West Midlands Combined Authority Childrens Summit in October/November 2018, which aims to bring national and regional expertise, knowledge and experience together to explore the potential and the challenges for children and young people in the West Midlands.
- Findings are planned to be presented at a conference jointly hosted by the Nuffield Trust, the Nuffield Foundation, Nuffield College Oxford and the IFS in 2nd half of 2019. The conference will look to link evidence on CYP in education, welfare, social welfare and health outcomes.
- Report planned Summer/Autumn 2019.
Processing:
The Nuffield Trust has received the pseudonymised HES data from NHS Digital under a separate Data Sharing Agreement for separate purposes. Appropriately minimised subsets of the data (customised according to the necessary requirements of each individual project) will be accessed and processed by employees of the Nuffield Trust and only for the purposes described in this Agreement.
Processing personal data is necessary for the legitimate interests which are described in this Agreement. The data to which access is requested are proportionate and necessary to achieve those interests. The Nuffield Trust have completed a legitimate interest assessment (LIA) and are satisfied that the interests of the data subjects do not override their legitimate interests; that they would reasonably expect the processing and it would not cause unjustified harm. The data subjects interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS Digital or after a defined period on completion of the project.
Whilst the nature of detailed analysis varies, the broad context of processing is in summary:-
1. The data is downloaded from NHS Digital and imported into SAS. The server is held on-site, and access is restricted to named individuals according to The Nuffield Trust's Information Security Management System (ISMS).
2. The data is held within separate folders on a dedicated research server.
3. Remote access to the database is permitted, but only through Citrix via secure token (so processing is still carried out on site), and with local printing and downloading disabled.
4. Only staff who have signed a confidentiality agreement and have received Information Governance training are permitted access.
5. All access to individual files is recorded, and a sample audited to investigate the existence of any adverse incidents, and ensure that appropriate access has been maintained.
6. Once held in SAS, the researcher will view the data and select a specific cohort for the individual study. Commonly, a process will initially take place to define the particular cohort of interest in terms of e.g. individual diagnostic codes or procedure codes. The researchers will use routinely available filter definitions where possible, but may amend these based on the nature of the study's group of interest. Depending on the research a similar control group may be established.
7. The individual researcher then analyses the data, before applying the relevant disclosure controls to any output. Software used will be SAS, R and stata; typically this will involve analysis on several outcome measures, risk adjustment and the construction of control groups. At all times, data remains on the Trusts local IT systems, in accordance with our ISO27001 scope. The Nuffield Trust uses on premise system with licenced software for SAS. R is an open-source application. Additionally, the physical server where the Trust stores and performs analysis, does not have internet access as it is blocked at the perimeter.
8. Under this Agreement, record level data will not be linked to this dataset. Data may be combined with publicly available demographic or geographic data, for example in relation to local Trust performance.
9. Outputs are thus produced which consist of aggregate data (or indicator/statistical data) only.
In all such work, the Nuffield Trust analyse patterns of hospital activity and outcomes by area, by year, by condition or by provider, developing comparative analyses and where appropriate standardising for a range of episode level, or patient level variables. The analyses may follow the health and care of a well-defined cohort of individuals over a lengthy period of time. Data maybe combined through linkage with other record level data sets (e.g. with data from the Community Service Data Set (CSDS) to look at associations with activity and outcomes of health visitor reviews). Data may also be combined with publicly available aggregated demographic and geographic data (e.g. to look at associations with deprivation and outcomes). Such analyses require complex processing for fair comparisons and to capture activity for whole populations - something that only nationally collated data can provide.
The Nuffield Trust will not provide access to record level data for any third parties, even where these third parties are study partners. The use of this data will be limited to Nuffield Trust for the purpose outlined above only. Data published or provided to third parties will be limited to aggregated data, at area, organisational or cohort-level all subject to small number suppression in line with the HES Analysis Guide.
The Nuffield Trust shall ensure access to data disseminated by NHS Digital is strictly prohibited and must not be accessed by the Trusts IT Managed Services provider.
All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by Personnel (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).
Rapid Service Evaluation (RSET) — DARS-NIC-194629-S4F9X
Type of data: information not disclosed for TRE projects
Opt outs honoured: Anonymised - ICO Code Compliant (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 - s261 - 'Other dissemination of information', Health and Social Care Act 2012 s261(2)(b)(ii), Health and Social Care Act 2012 s261(2)(a), Health and Social Care Act 2012 s261(2)(a); Health and Social Care Act 2012 s261(2)(a)
Purposes: No (Research)
Sensitive: Non-Sensitive, and Sensitive
When:DSA runs 2019-02-22 — 2022-02-21
Access method: Ongoing, One-Off
Data-controller type: THE NUFFIELD TRUST FOR RESEARCH AND POLICY STUDIES IN HEALTH SERVICES, UNIVERSITY COLLEGE LONDON (UCL), THE NUFFIELD TRUST FOR RESEARCH AND POLICY STUDIES IN HEALTH SERVICES, UNIVERSITY COLLEGE LONDON (UCL), UNIVERSITY OF CAMBRIDGE
Sublicensing allowed: No
Datasets:
- Emergency Care Data Set (ECDS)
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Outpatients
- Community Services Data Set
- Hospital Episode Statistics Accident and Emergency (HES A and E)
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Hospital Episode Statistics Outpatients (HES OP)
- Community Services Data Set (CSDS)
Objectives:
The Nuffield Trust for Research and Policy Studies in Health Services (The Nuffield Trust) is an independent health research charity overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics. The Nuffield Trust aims to improve the quality of health care that improves the health of people in the UK by providing evidence-based research and policy analysis and informing and generating debate. The Nuffield Trust undertakes work for the public good and within a research governance framework. These are the Nuffield Trusts legitimate interests which provide a lawful basis for processing personal data under the General Data Protection Regulation (GDPR).
In everything the Nuffield Trust does, they strive to be:
independent and free from vested interests;
rigorous, robust and evidence-based in the work they undertake;
relevant, supportive but also challenging when they need to be;
open and engaging with all those they come into contact with;
an organisation that makes a difference to the quality of policy-making and practice in the UK.
Mindful of the quote by the Chief Scientific Adviser for the Department of Health and Social Care that Research is of no use unless it gets to the people who need to use it, Nuffield Trusts strategy to maximise impact is as follows:
Investigate relevant research questions that are important to patients, commissioners, providers and other stakeholders;
Co-produce research with patients, the public, professionals and managers to address these questions using rigorous and appropriate research methods applied to the best available data;
Identify the implications of this research for current and future service delivery for different stakeholders;
Present the evidence in an appropriate format for the range of target audiences;
Be guided by input from evidence users, including patients and the public, in all of the above.
Challenges to health and care systems such as increases in life expectancy and multi-morbidities, developments in treatments and technologies, and wider economic pressures have resulted in a drive at national and local levels to develop and accelerate service innovations to benefit patients and the public. Currently, innovations do not spread as fast nor have the same degree of impact as in other sectors, particularly in terms of rapidly shaping frontline service delivery. There is therefore a need for new approaches to evaluation that provide robust evidence to meet these needs in a timely fashion. To address this need, the National Institute for Health Research (NIHR) Health Services and Delivery Research (HS&DR) programme have commissioned a Rapid Evaluation Research Team (RSET).
The Nuffield Trust is part of this collaborative team funded by NIHR over 5 years (2018/9 to 2022/23) to conduct rapid evaluations of health and care service innovations, in close partnership with those who deliver, manage and use these services.
The service innovations may be combinatorial and encompass several aspects of innovation such as technological, financial and service model re-design. To be successfully introduced and adopted by the health system, they need to demonstrate added value, cost-effectiveness, benefit to patients over current practice, and feasibility. At the same time, innovations generally require flexible and varied financial structures, and support mechanisms, to ensure they are scaled up and spread beyond local settings, whilst new service delivery models may demand innovative governance and payment arrangements. For these reasons, a flexible approach to applying new evaluation methods is important, in order to accommodate changing innovation processes and pathways. Developing these methods is necessary to address important research questions within this programme but will also be beneficial for future research.
The Nuffield Trusts partners in the Rapid Service Evaluation Team (RSET) study are researchers from the Department of Applied Health Research (DAHR) at University College London (UCL) - although the data accessed through this agreement will be managed by the Nuffield Trust, and will not be shared with UCL colleagues or any other third-parties (unless aggregated in accordance with standard disclosure rules). The RSET team have a remit to produce timely findings of national relevance and immediate use to decision makers.
The Nuffield Trusts and UCL's approach to evaluation will combine the questions, What works at what cost? with How and why? using a mix of innovative quantitative and qualitative methods. The team will enable provision of formative, as well as summative, feedback to people implementing innovations in health and care services. The data sets accessed through this agreement will be crucial to answering questions about the impact of these schemes on health and care. This will happen through high quality, timely research undertaken with a variety of methods. Over the five-year period the RSET team will identify approximately ten innovations to evaluate. NIHR, NHS England, DHSC and the RSET teams stakeholder advisory board (which includes clinicians, managers, and patient and public representatives) will have advisory input into identifying potential innovations. There will be a focus on rapid evaluation of these schemes with some projects aiming to complete evaluation within 6 to 9 months. Others may have a slightly longer timeframe, but the period from inception to analysis will necessarily be short, to allow for timely formative feedback to the areas undertaking innovations.
All evaluations will conform to the following scope:
- The subject of the evaluation will be a health or care provider (or group of health and/or care providers) which has/have adopted a new way of working which differs to those that have been widely adopted by the health system i.e. an innovation. Health or core providers may be NHS Trusts, Local Authorities or, for example, a group of district nurses. The innovation may be use of new technology or a financial and/or service model redesign.
- The HES data would potentially be used to calculate relevant metrics that those implementing the technology would be seeking to affect for example short term readmissions to hospital for the targeted groups in those areas. HES data would not necessarily be used in all of the evaluations. It would only be used where it would add value to the evaluation.
- The evaluations will attempt to determine whether there were any detectable changes in the metrics over time that might be associated with the introduction of the innovation.
- This would be done using a variety of techniques such as comparing metrics for the health care provider(s) pre and post introduction of the innovation or comparing the metrics of the health care provider(s) which adopted the innovation with health care provider(s) where the innovation is not in use.
- Standard hospital activity costing methods would be used to calculate the impact in terms of costs or savings to commissioners and hospitals and to model the impact of the innovation if adopted in larger areas (e.g. nationally).
- Alongside this quantitative analysis, local qualitative information gathering and analysis would be carried out to understand how and why the innovations might have had their particular impact in those local health economies.
The RSET team aim to minimise any delays (such as the approval process for data access) as much as possible in order to maximise time spent on each evaluation, to maximise the efficient use of researcher time and to maximise cost effective use of the NIHR grant. Note that the funders NIHR explicitly set up this programme to promote much more rapid analysis of service innovations, that might more quickly benefit health care services nationally.
The Nuffield Trust will be responsible for ensuring that all uses of the data will be within the agreed scope above.
The selection of research projects to be undertaken by the RSET team will be guided using a partnership approach, involving close working with the funder (NIHR), but also with other stakeholders via the RSET teams Advisory Board, Patient and Public Involvement (PPI) input and other networks. The topics will be selected by initially producing a long list of potential research projects based on recommendations from the funder, the Advisory Board, and the PPI panel. This will be supplemented with a range of activities by the RSET team to identify topics of current interest that it would be timely to investigate. These activities will include desk-based research of published outputs, analysis of social media, interaction with stakeholders at dissemination events, contacting networks, and by people alerting the RSET team to innovations through their interactive website.
A shortlist of potential research projects will be produced using pre-determined criteria to be agreed with the funder, the Advisory Board, and PPI panel. These criteria are likely to include considerations of timeliness, strategic importance, and feasibility. Topics identified by the funder will be prioritised.
Once a project has been identified and reviewed by the funder (to advise the RSET team as to whether the project is within the scope of the research grant), the project will enter a scoping phase. A topic specification form is filled in at this point. This includes a description of the motivation for undertaking the research, the research questions, the proposed work and the timescales. This is reviewed by the Nuffield Trust alongside its RSET partners and the funder, and a decision is taken by the RSET team as to whether the project should proceed to a full evaluation.
Where the decision is made to proceed to evaluation, a detailed research protocol is developed by the RSET team (the Nuffield Trust and its UCL partners). This protocol develops on the evaluation research questions and outlines in detail the design and methods proposed to answer the research questions including the team's plans for data processing. The protocol will include references to the evaluation teams approach to PPI, ethical issues, data and information management, risk management and dissemination of findings. The protocols will be reviewed by independent experts in healthcare organisation and management, and also by project stakeholders, NIHR and patient representatives. The aim of this stage of review will be to advise the RSET team of any shortcomings in the proposed work, or of additional research questions that the RSET might find valuable to address.
In developing the evaluation protocols the Nuffield Trust lead will ensure that any proposed use of HES data conforms to the agreed scope above, with appropriate input from our Data Protection Officer (DPO). The Nuffield Trust project lead will ensure that:
Projects have clearly defined objectives and analysis plans;
In each case, the use of the HES data is necessary and proportionate to the purpose of the project this will include consideration of the necessity for use of each individual HES dataset; the number of years of data; the sizes of any cohorts or control cohorts derived from the data, and the inclusion and exclusion criteria (such as presence of specific diagnostic or procedure codes);
Appropriate safeguards are in place to protect confidentiality; minimise risks of re-identification and use of excessive data beyond necessity
The individual or individuals within Nuffield Trust who will carry out the project will be bound by an analysis plan detailing what data is permitted for use in the project and how it shall be processed.
The Nuffield Trust and UCL are joint data controllers for the data under this Data Sharing Agreement. As described above, the funder, the Advisory Board and the PPI panel offer advice on what service evaluation projects might be undertaken. Additionally, the funder may have a role in determining that a given project is not within scope of the research grant. However, decisions in respect of use of the data under this Agreement are taken jointly by the Nuffield Trust and UCL without obligation to the funder or any other body. The Nuffield Trust and UCL will have joint responsibility for determining the purposes for processing the data under this Agreement to support the delivery of the projects and for determining the manner in which the data will be processed.
With reference to the Information Commissioners published guidance on data controllership, the Nuffield Trust and UCL can confirm that these two organisations are jointly responsible for directing the research project. Specifically they decide:
- to collect the data under this Agreement and the legal basis for doing so;
- which items of data to collect, i.e. the content of the data;
- the purposes the data are to be used for;
- which individuals to collect data about;
- whether to disclose the data the data will not be disclosed to any third party;
- whether subject access and other individuals rights apply; and
- how long to retain the data
There are three projects currently at an early scoping phase. It has not yet been determined whether these projects will need to use HES data and these are provided as examples of innovations which will be investigated and which may potentially use HES data. These are as follows:
An evaluation of NHSI interventions for trusts in Special Measures for Quality and for those on the challenged providers list
An evaluation of the introduction of the Buurztorg model (of self-managing community care nursing teams) into areas in the UK
An evaluation of the centralisation of specialised health care services
The nature of this NIHR programme is that further projects are not currently specified in this Agreement but will be identified at relatively short notice over the next several years. This Agreement permits the Nuffield Trust to use subsets of the data for the purposes of the projects specified above and for the purposes of the projects to be identified for the purpose of this NIHR programme which must be compliant with the description of such projects given above.
The Nuffield Trust will send NHS Digital details of each RSET projects progress as part of an annual update.
Some of the innovations the Nuffield Trust will look at will inevitably need to be analysed with reference to long term historic data and so the Nuffield Trust will require inpatient, outpatient and A&E data for all of England from 2008/09 to 2022/23.
Expected Benefits:
Since 2009 the Nuffield Trust's research studies, using NHS data, have been widely used to inform decision making and debate in health care. The Trust has held agreements with the NHS to receive patient datasets since that time. The Nuffield Trust publishes their reports on the Nuffield website and in peer reviewed journals where appropriate.
There are many examples of the Nuffield Trust's work being cited in parliamentary debates and select committees as well as used by national bodies including the Department of Health and Social Care and NHS England, CQC and Monitor. Many of the projects have been funded by the Department of Health and NHS, and the Nuffield Trust work in partnership with NHS and other care organisations and with universities. The Nuffield Trust has also provided examples of their studies for NHS Digital to use as evidence to the health select committee.
The benefits of the Nuffield Trust's work are seen in terms of decisions made by healthcare commissioners and providers, when thinking about the types of services needed to deliver benefits to patients, as well as by policymakers.
The wider RSET team have extensive networks in health and care sectors and an impressive track record in co-producing meaningful research findings and using a wide range of approaches to reach and influence decision-makers.
The RSET team will develop a communications and dissemination strategy for the overall programme as well as for each individual project.
In the Trust's experience, successful impact starts at the start of the evaluation process: selecting the right innovations for evaluation, framing the right research question, and identifying the right methodologies to maximise the chances of unambiguous results.
Impact and influence also depend on many other factors from academic credibility, networking and personal communication skills, to reputation (amongst insiders and the public/media) and, more broadly, experience in the sort of work RSET plans to do. In all these areas the RSET team have a good track record.
Using these approaches, the team has undertaken impactful projects in many areas, most notably in research to inform commissioning at local and national levels, and research that has had an impact on local and national policy.
For example, the evaluation of acute stroke service reconfiguration provides a powerful case study of the impact of the approach the team would take to enhancing the impact of RSET. Presenting formative findings to key clinician and commissioner stakeholders operating at national and local levels led to the research influencing policy and recommendations, and was pivotal to the decision to further centralise Greater Manchesters acute stroke services (implemented fully in March 2015).
Outputs:
The Nuffield Trust and the wider RSET team are highly aware of the need to balance rapid formative feedback (to areas conducting innovations) with the need to produce summative findings (shared locally and nationally, including academic publications).
The RSET team will use innovative approaches to sharing findings, including formative feedback locally during scoping and the full evaluation, and active dissemination of findings more widely so that they can be taken up quickly in other parts of the health and care system.
The Trust will use their extensive communications facilities & networks for dissemination (including professionals in the fields of media relations, public affairs, digital communications and event management), working with the UCL communications team, National Institute for Health Research (NIHR) Dissemination Centre, and Health Services and Delivery Research (HS&DR) programme to maximise the impact of evaluation findings.
The RSET teams communications/dissemination strategy will:
Identify the audience: who needs to know?
Set a timetable for dissemination outputs: weeks, not months
Decide on appropriate media and form of communications
Ensure written outputs are as simple as possible
Provide context and other evidence relevant to each evaluation.
The RSET team will develop a communication strategy for the overall programme and each project in collaboration with NIHR,PPI & end users, including stakeholder dissemination list; social media strategy; bespoke events; conference presentations; open-access journal articles; sharing findings with trade press, such as the Health Service Journal and National Health Executive.
In addition, the RSET team will plan outputs and events to stimulate formative learning over the course of evaluations. The RSET team will reach target audiences through a variety of tailored methods, from graphics and tweetchats on social media, to blogs, vlogs and blogshots, opinion articles, short films and visualisations to traditional media coverage and targeted two-way conversation events through, for example, Nuffield Trusts extensive learning sets (involving GPs, STP leads, acute trust CEOs etc).
The RSET team have also set up a micro site on the Nuffield Trust website (https://www.nuffieldtrust.org.uk/project/rset-the-rapid-service-evaluation-team) devoted to the whole RSET programme. This will serve as a focus for reaching out to the NHS and other organisations to advertise the RSET programme and its findings.
The Trust will review and evaluate the impact of their communications activity and refine their approach for each new output.
All outputs will be aggregated with small numbers suppressed in line with the HES Analysis Guide.
Processing:
All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by Personnel (as defined within the Data Sharing Framework Contract - i.e. employees, agents and contractors of the Data Recipient who may have access to that data).
The processing will follow typical Nuffield Trust processes:
In summary :-
The data is downloaded from NHS Digital and imported into SAS. The server is held on-site, and access is restricted to named individuals according to The Nuffield Trust's Information Security Management System (ISMS).
The data is held within separate folders on a dedicated research server.
Remote access to the database is permitted, but only through Citrix via secure token (so processing is still carried out onsite), and with local printing and downloading disabled.
Only individuals who have signed a confidentiality agreement and have received Information Governance training are permitted access.
All access to individual files is recorded, and a sample audited to investigate the existence of any adverse incidents, and ensure that appropriate access has been maintained.
Once held in SAS, the researcher will view the data and select a specific cohort for each individual study. Commonly a process will initially take place to define the particular cohort of interest in terms of e.g. individual diagnostic codes or procedure codes. The researchers will use routinely available filter definitions where possible, but may amend these based on the nature of each study's group of interest. Depending on the research a similar control group may be established.
The individual researcher then analyses the data, before applying the relevant disclosure controls to any output. Software used will be SAS, R and Stata; typically this will involve analysis on several outcome measures, risk adjustment and the construction of control groups.
Record level data would be linked to this dataset only where explicitly stated, and data may be combined with publicly available demographic or geographic data, for example in relation to local Trust performance.
Outputs are thus produced which consist of aggregate data (or indicator/statistical data) only
As an example, the Nuffield Trust identify a cohort of patients and examine their prior and post diagnosis patterns of hospital use, in the context of a comparator group. Analyses may be undertaken at local authority level and will take into account provision of acute trust services. In all such work, the Nuffield Trust analyse patterns of hospital activity by area, by year, by condition or by provider, developing comparative analyses and standardising for a range of episode level, or patient level variables - such as age, the presence of a long terms condition, prior patterns of use. The analyses commonly follow the health and care of a well-defined cohort of individuals over a lengthy period of time. Such analyses require complex processing for fair comparisons and to capture activity for whole populations - something that only nationally collated data can provide.
Additional note - third parties:
The Nuffield Trust will not provide access to record level data for any unnamed third parties, even where these third parties are study partners. The use of this data will be limited to Nuffield Trust for the purpose outlined above only. Data published or provided to third parties will be limited to aggregated data, at area, organisational or cohort-level all subject to small number suppression in line with the HES Analysis Guide.
The Nuffield Trust shall ensure access to data disseminated by NHS Digital is strictly prohibited and must not be accessed by the Nuffield Trusts IT Managed Services provider.
The data will only be used for the purposes described in this agreement.
Nuffield Trust Primary DSA — DARS-NIC-226261-M2T0Q
Type of data: information not disclosed for TRE projects
Opt outs honoured: No - data flow is not identifiable, Anonymised - ICO Code Compliant, Identifiable, No (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), , Health and Social Care Act 2012 s261(2)(b)(ii), Health and Social Care Act 2012 - s261 - 'Other dissemination of information', Health and Social Care Act 2012 s261(2)(a)
Purposes: No (Research)
Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive
When:DSA runs 2019-07-01 — 2022-06-30 2019.10 — 2024.11.
Access method: Ongoing, One-Off
Data-controller type: THE NUFFIELD TRUST FOR RESEARCH AND POLICY STUDIES IN HEALTH SERVICES
Sublicensing allowed: No
Datasets:
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Admitted Patient Care
- Community Services Data Set
- Hospital Episode Statistics Outpatients
- Emergency Care Data Set (ECDS)
- HES:Civil Registration (Deaths) bridge
- Patient Reported Outcome Measures (Linkable to HES)
- HES-ID to MPS-ID HES Accident and Emergency
- HES-ID to MPS-ID HES Admitted Patient Care
- HES-ID to MPS-ID HES Outpatients
- Community Services Data Set (CSDS)
- Hospital Episode Statistics Accident and Emergency (HES A and E)
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Hospital Episode Statistics Outpatients (HES OP)
Objectives:
The Nuffield Trust for Research and Policy Studies in Health Services (The Nuffield Trust) is an independent health research charity overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics. The Nuffield Trust aims to improve the quality of health care to improve the health of people in the UK by providing evidence-based research and policy analysis and informing and generating debate. It provides a trusted and respected voice at a time of unprecedented challenge to the NHS and social care system.
Under the HRA’s GDPR Operational Guidance the Nuffield Trust therefore relies on Article 6 (1) (f) “processing is necessary for the purposes of the legitimate interests pursued by the controller or by a third party, except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject”. The Nuffield Trust’s legitimate interest is carrying out healthcare research in the wider public interest of improved healthcare outcomes for NHS patients.
The Trust relies on Article 9 Condition 9(2) (j) (processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject) as the condition for processing “Special” categories of personal data.
The Nuffield Trust has determined that no moral or ethical issues are raised by its processing of HES or other patient data sets (such as emergency or community care data). All data supplied is pseudonymised. All outputs contain only aggregate data, with small numbers suppressed to agreed thresholds in line with the HES (or appropriate) analysis guide.
The Nuffield Trust focuses its activities on six priority areas:
• Health & social care finance and reform
• NHS Workforce
• Older people and complex care
• Quality of care
• New models of health care delivery
• Children and young people
These priorities were set in 2015, with the exception of “Children and Young People” which was added in 2017, and are anticipated to remain valid until at least 2020.
The work of the Trust is organised into a number of programmes which address these priorities. The programmes are broadly aligned to priorities as shown below, with a desire to develop a number of the programmes to cut across one or more of the strategic priorities to maximise reach and impact. For example, the Quality programme is relevant to both Quality of Care and Primary Care priorities, and the Workforce programme impacts on both Workforce and New Models of Care. Each programme has a sponsor at Director level, as well as a programme lead, who is typically a Senior Researcher or Senior Policy Fellow.
The data from NHS Digital is vital to the Trust’s work because it is an essential source of information on patient activity and outcomes, which allows comparisons across different parts of the NHS and over time. The use within programmes and projects is outlined in more detail in the following sections.
5a.i. Rationale for strategic priorities and programmes
Health & social care finance and reform: The NHS is introducing new models of care and a different way to work with councils through Sustainability and Transformation Partnerships. All of this is being attempted at a time of historic financial constraint, with record trust deficits and an intense search for efficiencies. In addition, Britain's departure from the EU could mean major changes and deep uncertainty for health and social care staffing, regulation and workforce.
The Nuffield Trust’s focus is on improving the quality of policy-making by providing evidence-based analysis, asking insightful questions and providing a challenging view. Programmes in this area cover:
• Commissioning and System Delivery – how the health system is changing, for example, moving to integrated care.
• Topical Issues – for example, issues such as Brexit, which impact on the health system.
• Funding and Sustainability – impact of spending constraints and how funding is allocated to health and care organisations
Workforce: The NHS workforce is under extreme pressure, and it is not just a matter of numbers. Some areas are undersubscribed, but others have an over-supply. New technologies and care models require new types of staff, and training for this highly skilled workforce has long lead times. Getting all of this right has never been more critical, especially with the uncertainty around migration following the country's vote to leave the EU. The development of new models of care is often driven by changes in workforce and vice versa. Being able to make the links between the two areas will be very important.
The workforce programme addresses how the NHS manages workforce pressures and develops a sustainable workforce. The Nuffield Trust ensures their research and analysis informs the Government’s strategy for the future health care workforce.
Older people and complex care: Older people are among the most intense users of health and social care services and opportunities exist for improving the care offered to them. In particular, the needs of older people with multiple health problems and complex conditions are recognised as being a key driver of health service design utilisation and a sentinel marker of the quality of care.
The older people and complex care programme examines models for delivering care to older people and people with complex needs, given the growing number of people with multiple conditions.
Quality of care: Patients and the public expect to receive high quality, safe care, where and when they need it. Despite this, it is known that the quality of care is variable – between organisations, different conditions, and different patient groups. It is also known that the UK lags behind other similar countries in treatment of common diseases, and while some aspects of care have improved over time, for many aspects of care improvements in quality have stalled.
The level of funding for health and social care will influence what can be achieved, but regardless of this, the Nuffield Trust needs to understand how the quality of care is changing, to generate evidence on what can be done to improve quality, and to ensure that improvements which will make the most difference to patients and the public are prioritised.
Quality of care programmes cover:
• Quality – Drawing on its other work programmes, the Nuffield Trust uses expertise in measurement and analysis of quality of care, to provide independent scrutiny, and undertakes research to improve the evidence on quality of care.
• Evaluation – The Nuffield Trust also considers how effective policies intended to improve quality have been, and what can be learnt, in order to influence future decision makers, locally and nationally. This includes evaluating service changes and innovations in the delivery of care.
New models of health care delivery: NHS England’s Long Term Plan, and previously the Five Year Forward View, outlines a vision for how the traditional boundaries between primary care, community services and hospitals will be dissolved over the next five years and beyond. Breaking down the traditional boundaries between different parts of the NHS and social care offers the prospect of reshaping services around the needs of individuals and reducing reliance on hospitals. This will require a move away from single institutions towards networks of care. In this world the capacity of care delivered outside hospitals will need to be boosted through reforms to general practice, while technology and new types of staff enable expertise and information to be shared.
The Nuffield Trust will build on the considerable experience and reputation it has in conducting evaluative work of new models of care, with a number of research projects in place with Royal colleges and specialist societies. The Trust will also provide briefings and analysis that help health leaders choose and implement changes, and bring them together to share ideas.
New models of health care delivery programmes in this area cover:
• Acute Medical Models – models of hospital care and the optimal configuration of services to deliver inpatient services.
• Primary Care – future of primary care and role of primary care in a changing health system.
• Digital – the impact of new technology on delivery of health care, and opportunities to improve care using technology.
Children and young people: The health and wellbeing of children and young people depend on the efforts and commitment of their parents and families, their schools and local communities and the decisions and actions of public service providers and policymakers. This creates a moral imperative to safeguard and promote their interests. There are nearly 20 million people aged 0-24 years old living in the UK, almost a third of the population. There have been long term improvements in health outcomes and quality indicators for children and young people, however, more recently those improvements have slowed or even reversed and internationally he UK compares less well than it might wish. Child health has changed over the last 45 years. Mortality data shows an epidemiological transition away from acute infectious illness towards chronic long-term conditions, yet the way health care services are provided is still heavily hospital focused and reactive. Change has been slow to come due to a long term lack of policy focus on most of the services for children and young people
The Children and Young People work programme will develop the evidence base on how problems and challenges could be addressed by policy and decision makers at a national and local level and/or by individual teams and professionals working with children and young people. The work will have a particular focus on what health care services and systems can do, but will also include how the different parts of the wider context for children and young people interact with each other to address the issues. The Trust also aims to help build networks between different organisations and people who can shape the direction of health care services, health systems and other services.
The work programmes within the strategic priorities were developed in 2018 and are expected to remain aligned to the strategic priorities above until at least 2020 when they may be reviewed.
5a.ii. Use of HES and CSDS data within programmes and projects
Each programme is delivered through individual projects. Projects vary in length and complexity from major research studies which could span a number of years, to shorter term projects resulting in a single output, for example a briefing or presentation. Some Nuffield Trust projects are qualitative, involve analysis of published data, or data from surveys, and so do not require use of HES or other NHS Digital data sources. However, many others are reliant on HES and other NHS Digital-supplied data sets.
To undertake such projects the Nuffield Trust has determined that it requires HES data including the Emergency Care Data Set which will replace the HES A&E datasetand the Community Services Data Set which is now available and is a very welcome addition to the existing hospital based HES datasets.
Although the methods for use of HES and other patient datasets will vary from project to project, there are a number of common ways in which the data is used. This Agreement permits use of the data by the following methods:
• Assessing data quality, completeness, relevance and volumes of data prior to and during undertaking research analysis;
• Analysis to provide contextual information about NHS organisations or areas where research projects are being undertaken (in addition to analysis of relevant comparator organisations and areas), for example analysis of volumes of emergency admissions by specialty;
• Descriptive analysis of NHS activity and calculating age-sex standardised activity rates, for demographic or other patient cohorts, NHS organisations or administrative areas relevant to understanding NHS and government policies, and identifying gaps in policy;
• Using health care activity data to track changes in events such as emergency department attendances, admissions and re-admissions, time on caseload (for community patients). These are important (though imperfect) proxies for health outcomes and tracking trends in these events over time enables analysis of the impact of changes in health services;
• Analysis of health care resource use through applying NHS tariff or reference cost data to activity data derived from patient utilisation of services, and analysis of measures of capacity including bed occupancy from utilisation data;
• Undertaking detailed analyses of particular health events to identify particular issues with quality of care, for example as part of the harm project (see below), and patients with particular needs (eg frailty). This includes developing indicators of quality of care, covering access, effectiveness, continuity, coordination, safety or outcome;
• Examining variation between hospitals, patient groups or areas in use of services to identify populations where there are gaps in care, and also areas delivering high quality care from which the NHS can learn more widely using multivariate methods including standardisation, regression modelling and risk analysis;
• Analysis to determine the impact of specific service delivery models, such as the introduction of new pathways of care, or care settings, including acute admission units, same day emergency care, outpatient advice models, primary care networks and other models relevant to current NHS or government policy;
• Development and application of risk prediction models by methods including multivariate regression, cluster analysis, decision trees and machine learning for analysis to identify cohorts of patients with similar needs and to analyse variations between hospitals, patient groups or areas and for measuring the impact of service delivery models;
• Analysis to understand how wider health system and other factors impact on outcomes and activity, including differences between urban and rural service delivery or needs, impact of deprivation and variation in socio-demographic characteristics of the population and local factors such as education and social care provision and quality;
• Analysis to inform international comparisons of health data and quality, including replicating quality measures used in other health systems;
• Making evaluations of healthcare innovations more robust by using matched case-control analysis – comparing outcomes or trends in a service being evaluated with similar patients elsewhere;
• Evaluations of health care innovations using methods including time-series analysis, including interrupted time series, panel data and cohort studies;
• Use of the above methods in combination for particular research projects;
• Producing visualisations of analysis and results from the above methods.
The data will not be linked with other record level datasets and there will be no attempt to reidentify individuals from the data. The data may, if required, be linked with national datasets in the public domain (e.g. indices of social deprivation) subject to a risk assessment that the linkage will not increase the risk of reidentification of individuals within the dataset.
Should the Nuffield Trust wish to undertake a project involving a specific cohort of patients for which a data linkage is required, a separate application to NHS Digital and, subject to approval, a separate Data Sharing Agreement permitting the processing will be required.
The number of concurrent projects using HES data will vary, but typically there are 5-6 projects in progress which use HES data at any one time, with perhaps 2-3 being completed in a calendar year. There may also be additional projects for which the analysis phase is complete, but work is ongoing on peer review publications and dissemination of the findings.
Projects are grouped within programmes, but frequently cut across other programmes. As the Nuffield Trust is a small organisation, it seeks to maximise impact by undertaking work which can inform more than one programme or strategic priority. Undertaking projects which support multiple programmes enables the Trust to deliver greater benefits to the health and care system.
5a.iii. How decisions are made about projects and use of HES and CSDS data
This Agreement permits the Nuffield Trust to use the data for the purposes of projects undertaken within the work programmes described above, and which are conceived, planned, approved and initiated through the following process:
1. Projects intended to meet the programme’s aims will be conceived and planned through an iterative process involving the Programme Director and Programme Lead with appropriate input from the Data Protection Officer (DPO). The Programme Director and Programme Lead will ensure that:
• Projects have a clearly defined objectives and operational plans;
• The aims of projects align with at least one of the programme’s aims (as stated above)- all projects must clearly and logically fall within the scope of having one or more of the aims listed and achieving those aims through one or more of the methods listed above ;
• An analysis plan is prepared for each project, setting out the data requirements and methods;
• In each case, the use of the HES data is necessary and proportionate to the purpose of the project and that the minimum amount of data necessary is used - this will include consideration of the necessity for use of each individual HES dataset; the number of years of data; the sizes of any cohorts or control cohorts derived from the data, and the inclusion and exclusion criteria (such as presence of specific diagnostic or procedure codes);
• Appropriate safeguards are in place to protect confidentiality; minimise risks of re-identification and use of excessive data beyond necessity.
A Data Protection Impact Assessment (DPIA) is completed at strategic level and covers all associated projects. A Legitimate Interest Assessment (LIA) will be completed internally for each research project and signed off by the Data Protection Officer (DPO).
2. A project management template will be completed and submitted to the Nuffield Trust Project Planning Committee (PPC). This excel template serves a wider purpose than just planning and remains valid throughout a project’s life, serving as the central control document in the management and delivery of the project. The PPC is chaired by the Director of Communications and consists of the Chief Executive, Director of Research, Director of Policy, Senior Fellow, Senior Policy Analyst and other representatives from Research, Policy and Communications. It provides a forum for the discussion, in depth and expert assessment and approval of project ideas, drawing on senior level expertise and knowledge across the Trust.
The committee is responsible for receiving assurance that all projects:
• Align to the strategic aims of the Trust;
• Are methodologically sound; and
• Draw fully on the expertise within the Trust including making connections to other related work.
The Committee will approve or recommend the approval of projects in line with the internally approved schedule of management authority and responsibility.
3. The individual or team within Nuffield Trust which will carry out the project will define and be bound by the analysis plan detailing what data is permitted for use in the project and how it shall be processed.
Project Timescales
The time frame for undertaking each project will vary according to project resource, extent of the research and data
analysis required. This is always considered as part of the Project Planning Committee's review and approved based upon
the detail of each individual project.
Project Funding
Some projects under the programme will be funded by the Nuffield Trust but funding is also being sought from other partners including National Research and Charitable organisations, such as the Nuffield Foundation, NIHR and the Health Foundation but may not be limited to these organisations. Funders will take both the forms of partners in collaborative working, as well as commissioners only, that is, the Nuffield Trust will be sole data controller for the analytical work. Though the Nuffield Trust may be commissioned by another organisation to undertake a project involving the processing of data under this Agreement, the Nuffield Trust will retain sole discretion for determining if and how the data would be used for any purpose. The Nuffield Trust will not be reliant on securing funding from external partners to complete this research. However, the Nuffield Trust will need to recognise the contribution of any external partner in their outputs.
Data Governance
The Nuffield Trust has independently determined the purposes for which it requires and will process the data under this Agreement in terms of its priorities and programmes which will use the data. The Nuffield Trust has sole autonomy for determining if and how the data will be used for projects in support of those priorities and programmes. As such, the Nuffield Trust is the primary data controller and the sole data controller named in this Agreement. In certain projects which involve collaboration with individuals or organisations outside of the Nuffield Trust, it may be the case that there is joint controllership for the specific project or aspects of it but in all cases, the Nuffield Trust will retain sole autonomy for determining if and how the data under this Agreement will be processed and the Trust cannot be compelled by any third party to process the data for any purpose of in any way. The data will only ever be used for purposes that directly support the priorities of the Nuffield Trust as described in this Agreement.
Under this Agreement, NHS Digital data will only be accessed by Nuffield Trust personnel (defined as employees, agents and contractors of the Trust) all of whom have been appropriately trained in data security and confidentiality. On occasion, the Nuffield Trust may invite individuals with significant or unique expertise to join the research team and contribute to data analysis. These individuals will either be seconded into the Nuffield Trust or will have an honorary contract with the Trust for the purpose and duration of a specific project or task within a project and as such will be considered agents of the Trust. These individuals would be subject to the same information governance framework as the Nuffield Trust employees and would be required to meet the level required to access the Nuffield Trust’s secure, ISO27001 certified data environment.
Should the Nuffield Trust wish to utilise an external organisation as its data processor, a separate application to NHS Digital and, subject to approval, a separate Data Sharing Agreement permitting the processing will be required.
Results may be shared in aggregate form in accordance with the Nuffield Trust's Research Governance framework, with small numbers suppressed. The data accessed through this Agreement will be managed by the Nuffield Trust, and will not be shared with any other third-parties.
The Nuffield Trust will produce an annual report for NHS Digital which will detail the outputs from all active and finished projects, which have been delivered during the year, and the planned outputs from new projects. The report will reference the associated strategic priorities and programme(s). Details will also be available on the Nuffield Trust’s website.
5a.iv. Examples of projects
The following examples of projects which have used HES data illustrate the range of work already undertaken in recent years, and upcoming projects. These are provided as examples of work the Nuffield Trust has undertaken or is or will be undertaking to meet the objectives of its programmes in support of its strategic priorities. The examples are not intended to form a comprehensive list of projects permitted under this Agreement.
Integrated care pioneers evaluation
Integrated Care 'Pioneers' are models of care aimed at reducing the impact of boundaries between health and social care providers. The evaluation of the pioneers has wider lessons for the current policy for integrated care systems.
• Nuffield Trust programmes: Commissioning and System Delivery; Evaluation; New models of care
• Overview: The Nuffield Trust is leading on one work package to develop and monitor a set of system level indicators, as part of a wider project with the DH Policy Innovation Research Unit based at the London School of Hygiene and Tropical Medicine. The analysis of HES data to develop indicators was solely the responsibility of the Nuffield Trust. The LSHTM does not have access to the data.
• Data minimisation approach: This project involves looking at time trends across a range of health and social care indicators. The Pioneers were introduced in 2013 but to have a good understanding of trends prior to this, HES data are used from 2004/05 with follow up until 2019/20, when that data is available. The indicators are presented in aggregated form in a dashboard with local authority district as the lowest geographical unit available. For the majority of indicators all ages are included but where possible indicators are restricted to a particular age group. Only variables relevant for each indicator were used.
• Duration: The project runs from 2016 to 2021
Medical Generalism
The rising numbers of older and more complex patients is one of the most pressing problems facing the NHS. Although they receive the most resource-intensive care, their problems are less likely to be accurately diagnosed and have more adverse outcomes than other age groups. The current models of hospital care, which are heavily based around specialists delivering disease-specific care, serve these patients poorly, as it is often fragmented and poorly co-ordinated. A revival of medical generalism has been suggested to provide better and more cost- effective care. The reality, however, is that there is a paucity of evidence on which to base new models of medical generalism.
• Nuffield trust programmes: Older people and complex care; Workforce
• Overview: The overarching aim of this NIHR funded research project was to identify the models of medical generalism used in smaller hospitals and explore their strengths and weaknesses from patient, professional and service perspectives. The Nuffield Trust used HES data to create a classification of patients that might benefit from general medical care and, based on this classification, provide a descriptive analysis of the workloads of smaller hospitals.
• Data minimisation approach: Hospital Episode Statistics data (year range 2007/08–2017/18) was used to create a classification of patients that might benefit from general medical care and, based on this classification, provide a descriptive analysis of the workloads of smaller hospitals. The final sample included 69 smaller NHS Trusts providing acute medical care in England, although some analyses used only 68 hospitals as a result of merges during the data period.
A data set based on ‘Index episodes of care’ for emergency admissions across the selected generalist medicine specialities identified in HES inpatient data 2012/13 for the smaller hospitals cohort was created so that five years of prior patient history for cancer patients as well as three years of subsequent history could be included. Cases with a specific diagnosis indicating specialist care or where patients had been transferred out of hospital were excluded. A data set was created covering 1.9 million episodes in the selected smaller hospitals.
Following development of the case mix classification, analysis focused on different data collection years dependent on the nature of the research question. For instance, the degree of alignment between patient case mix and medical generalist/skills mix in smaller hospitals was assessed was based on analysis of the 2015/16 data set. Population level analysis of admission patterns used data from 2017/18.
• Duration: The main research phase of the project was from 2016 to 2018.
This analysis was undertaken under a previous Data Sharing Agreement with NHS Digital in conjunction with University College London (UCL) which undertook parts of the analysis as a data processor under contract to the Nuffield Trust. Nuffield Trust defined the analysis and manner in which the data should be processed as well as the tools used (i.e. the software). The Trust also owns the outputs. The UCL Department of Applied Health research team carried out the above work on the Nuffield Trust site under the same Information Governance arrangements as Nuffield Trust staff - i.e. a signed confidentiality agreement as evidence that they had read and understood the Trust's Information Security Management System (ISMS), completed equivalent training and worked in the same environment. No data provided by NHS Digital left the Nuffield Trust site and the data was only processed on Nuffield Trust servers.
Evaluations of new services for patients outside of hospital
The Nuffield Trust has undertaken a number of evaluations of programmes to reduce admissions or readmissions to hospital, through better support for patients at home.
• Nuffield Trust programmes: Older people and complex care; New models of care; Evaluations
• Overview: This is a programme of work undertaken over a number of years. For example, the Nuffield Trust undertook a project funded by Age UK of services to support often vulnerable older people at high risk of hospital admission, which assessed the impact of this service on future emergency admissions. Previous projects were undertaken for a range of funders including the British Red Cross, Royal Voluntary Services and the Cabinet Office.
• Data minimisation approach: These projects took place using data linkage to HES data for specific cohorts of patients receiving innovative services. The Nuffield Trust used HES data from two years prior to the date each individual started receiving the service to allow for calculation of risk of emergency admission scores. To implement these models, the Nuffield Trust used a selected list of fields from inpatient, outpatient and A&E datasets (including admission method, diagnosis codes, procedure codes, A&E investigation codes, outpatient attended/did not attend). The Nuffield Trust compared each group of service recipients with a selected matched control group – matching one control person to each service recipient. The Nuffield Trust selected controls from a larger pool of possible control individuals. This larger pool of possible control individuals were selected to reflect the intervention cohort – eg they were the same ages (for example 55+ or 60+), and lived in similar areas (as defined by ONS and other analysis). Risk scores were calculated for all possible controls – involving again two prior years of HES data. For the evaluation outcomes, the intervention and matched control groups were followed up for a limited number of months (maximum 16, but more usually 6-9) on a limited number of activity measures.
• Duration: This was undertaken from 2013 to 2019
Comprehensive Geriatric Assessment (CGA)
The CGA was a multidisciplinary process designed to assess a frail older person’s medical conditions, mental health, functional capacity and social circumstances. However information is lacking on the types of patients that might benefit the most. The aim of this work is to describe existing models of care and to validate tools to deliver CGA on a hospital wide basis.
• Nuffield Trust programmes: Older people and complex care; Quality of Care; Evaluations
• Overview: This was a collaborative project undertaken as an NIHR funded project undertaken with the Universities of Leicester and Newcastle. The project incorporated linked HES, ONS and clinical data, managed under a specific Data Sharing Agreement (DARS-NIC-383324-D6B8T).
• Data minimisation approach: Three clinical cohorts were linked to HES as part of this project. The recruitment dates for these ranged from 2006 to 2012 and therefore, HES was required from 2004/05 to 2016/17 to allow a period go
Expected Benefits:
Since 2009 the Nuffield Trust's research studies, using NHS data, have been widely used to inform decision making and debate in health care. The Trust has held agreements with NHS Digital/HSCIC to receive patient datasets since that time. The Trust publishes its reports on the Nuffield Trust website and in peer reviewed journals where appropriate.
Analysis of HES data will support the Nuffield Trust in delivering its objectives and meeting their charitable purposes of providing evidence to improve the health of the population. Examples are presented below, linked to each of the objectives:
Improving the evidence base that leads to better care for people in the UK through research and analysis:
• Evaluation of health and care innovations enable the NHS to identify whether new services or models of care are meeting their objectives, in order to identify whether they should be scaled up and rolled-out, or whether they should be stopped. This ensures more effective use of public money and improved services for patients.
• Major research projects such as Comprehensive Geriatric Assessment provide tools and analysis which organisations can use to identify patients with particular needs, and monitor delivery of the quality of care to address those needs.
• Targeted projects such as the Prisoner health project provide new evidence on the care delivered to this patient group which has significant health needs, and for which there are considerable challenges in delivering high quality care. This information will identify gaps in care, and options to address these to be developed based on high quality evidence of need.
Use of independence to provide expert commentary, analysis and scrutiny of policy and practice
• The Nuffield Trust will use HES data to develop measures of quality of care, as part of Quality Watch, other projects, and responsive research. Identifying areas where care could be improved supports public debate of the priorities of the NHS, and provides evidence for policy makers when developing health policies
• Projects such as the Medical Generalism project will produce evidence on the impact of the trend towards increased specialisation in medicine on the ability of hospitals to deliver high quality of care, particularly focusing on the care delivered to patients in smaller hospitals. This is an example where analysis of HES data is uniquely able to provide evidence on the quality of care within hospitals, for which aggregate performance data is not suitable.
Bring policy-makers and NHS staff together to raise issues and identify solutions:
The role of the Nuffield Trust as an independent and respected organisation enables them to bring together clinicians, managers and policy makers to review evidence, and contribute to interpretation of findings and analysis. This improves the quality of outputs, and their impact, and ensures that analysis undertaken is focused on addressing the issues which matter in the health system, and on achieving maximum impact for the work the Nuffield Trust do.
Outputs:
A key aspect for all the research projects undertaken is ensuring that learning and research findings are disseminated widely, using press and television media, social media, conferences and practitioner networks. The Nuffield Trust aims to maximise the impact of its work, to ensure the greatest benefit to the health and care system, in line with their charitable purposes.
A communications plan is developed for each programme and project, based on the most effective way of securing impact for that project. Each strategic priority has a dedicated web page on the Nuffield Trust website, which provides an overview of why the topic is important, the overall approach, and links to programmes and projects related to that priority.
Outputs from a project could include:
• Nuffield Trust reports or briefings
• Blogs commenting on the findings
• Papers for peer reviewed publications in quality academic journals
• Sharing findings with the trade press (for example Health Service Journal)
• Conference presentations or posters
• Reports for commissioners, published on the relevant organisations website
• Bespoke events
• Toolkits or resources to provide information for local NHS organisations
• Press releases and tweets to publicise outputs
The Nuffield Trust will use their extensive communications facilities & networks for dissemination (including professionals in the fields of media relations, public affairs, digital communications and event management), working with their partner communications teams, to maximise the impact of findings.
The combination of outputs will vary from project to project.
For example, the Comprehensive Geriatric Assessment project, the outputs delivered or planned have so far included:
• A project report to the National Institute of Health Research that is waiting to be published (https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/12500302/#/)
• A peer reviewed publication in the Lancet presenting the methodology and validation of the hospital frailty risk score (https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)30668-8/fulltext)
• A toolkit in excel which is available at NHS hospital trust and local authority level, for local needs assessment and benchmarking (https://www.nuffieldtrust.org.uk/research/comprehensive-geriatric-assessment-needs-assessment-tool), that the Nuffield Trust has promoted through its twitter feed (https://twitter.com/NuffieldTrust/status/1034089904735768576, https://twitter.com/NuffieldTrust/status/1033356320915824640) and it has also been disseminated by the British Geriatrics Society (https://www.bgs.org.uk/resources/hospital-wide-comprehensive-geriatric-assessment)
• A guest blog from Professor Simon Conroy on the Hospital Frailty Risk Score discussing the advantages of being able to identify older people at risk in hospitals, and how it could make a real difference (https://www.nuffieldtrust.org.uk/news-item/the-hospital-frailty-risk-score)
• A BGS event for clinicians on frail older people which covered the work from the programme: http://www.acutemedicine.org.uk/wp-content/uploads/2018/04/BGS_Urgentcare_2018_v1-2.pdf
• European Geriatric Medicine Society Conference in October with two posters to present findings: http://www.eugms.org/2018.html
• Two further papers for peer reviewed journals are planned covering specific aspects of the findings.
• The project was a finalist in the ONS Research Excellence Awards 2018 (https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/onsresearchexcellenceaward) which was a further opportunity to disseminate the findings and methods within the wider research community.
For the Quality Watch programme, outputs included:
• Over three hundred healthcare quality indicators on a dedicated website (now part of the Nuffield Trust website).
• 14 “Focus on” reports, two briefings, and several data blogs.
• Four annual reports that reviewed the state of care quality in the NHS in England and how it had changed over time.
• The Nuffield Trust provided a platform for internal and external expert commentary, with 135 editorial items (79 blogs (34 by external authors); 17 ‘latest data’ posts, covering monthly NHS combined performance summary data; 13 ‘indicator update’ posts, detailing stories emerging from ongoing data updates on the site; 26 news stories (mostly comprising press releases)).
• The Nuffield Trust also held a large number of events (QW conferences: October 2013, October 2014, November 2015; All Parliamentary Health Group events, February 2014 and December 2014; Social care event at Nuffield, May 2014; Allied Health Professionals event at Nuffield, November 2014; Public health roundtable at Nuffield, June 2016; Children and Young People roundtable at Nuffield, June 2017).
Previous outputs have also included:
• Integrated Care Pioneers: Outputs from the HES data analysis elements of the project are a system level dashboard to monitor indicators of integration in pioneer and non-pioneer areas, peer reviewed publications of this analysis, Nuffield Trust blogs/briefings on analysis challenges and research reports for the Department of Health.
• Medical Generalism: The project report has been submitted to NIHR for review and work is in progress on preparing papers for peer reviewed journals and other dissemination routes. A conference presentation has been accepted on the method used to develop patient pathways using HES data, at the Health Services Research UK conference in July 2019.
• Evaluations of new services for patients outside of hospital: Outputs from the project included interim and final reports for funders, Nuffield Trust blogs and other publications. For example, the Nuffield Trust produced reports for Age UK at different stages of the project, a Nuffield Trust report and blog, and a comment article for the Health Service Journal. A seminar on findings from these evaluations is planned for later in 2019.
• Comprehensive Geriatric Assessment (CGA) Outputs from the project are described in detail above. Further work on peer reviewed papers from the project is ongoing.
• Harms and Quality of care measures from routine data: Outputs from the project include a project report for NIHR and papers which have been submitted to peer reviewed journals.
• Prison Health: Outputs from the project include Nuffield trust reports, blogs and briefings, conference presentations and papers for peer reviewed journals.
• London Quality Standards (LQS): Internal reports to funders were produced, along with Nuffield Trust publications and blogs. Work is ongoing on papers for peer reviewed journals.
• Organisation of Primary Care: Outputs include a range of external publications and reports, and papers in peer reviewed journals.
In the past year outputs for the Nuffield Trust as a whole have included:
• 25 reports (in all cases with complementary blogs, charts or infographics)
• 12 briefings and explainers
• 90 blogs and long reads
• 10 charts and infographics (in addition to those in reports, blogs and briefings)
• 44 press releases
• Approximately 1200 Nuffield Trust tweets (The Trust has 45000 followers)
• 20 citations for NT staff in external peer reviewed journals
• 70 speaking engagements
• 10 corporate events
• 426,147 web site visits, averaging 1,674 per day across 610,413 sessions
• 100+ updated QualityWatch indicators and around 300 tweets
All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES (or appropriate) Analysis Guide.
Processing:
NHS Digital will send quarterly and ‘Annual Refresh’ data extracts of pseudonymised HES Accident & Emergency (to be replaced with Emergency Care), Outpatient, and Admitted Patient Care and Community Service Data Set data to the Nuffield Trust by Secure Electronic File Transfer.
Under this Agreement, the data will only be processed by Nuffield Trust personnel (defined as employees, agents and contractors of the Trust) all of whom are either individuals who:
i) are substantively employed researchers working under contract on behalf of the Nuffield Trust; or
ii) are employed by Nuffield Trust as specialist third party consultants having either being seconded into the Nuffield Trust or have an honorary contract with the Nuffield Trust for the purpose and duration of a specific project or task within a project.
All research staff are subject to confidentiality requirements to access data to support business objectives and required to complete mandatory data security training annually
Whilst the nature of detailed analysis in relation to each project varies, the broad context of processing is consistent. In summary:
• The data is downloaded from NHS Digital to the Trust’s Research Server. The server is held on-site, and access is restricted to named individuals according to The Nuffield Trust’s security policy using Microsoft Role Based Access Control (RBAC).
• The data is held within separate folders within the server.
• Remote access to the database is permitted, but only through Citrix via secure token and with local printing and downloading disabled.
• Only staff who have signed a confidentiality agreement and have received IG training are permitted access.
• All access to individual files is recorded, and a sample audited to investigate the existence of any adverse incidents, and ensure that appropriate access has been maintained.
• The researcher will view the data and select a specific cohort for each individual study. Commonly a process will initially take place to define the particular cohort of interest in terms of e.g. individual diagnostic codes or procedure codes. The researchers will use routinely available filter definitions where possible, but may amend these based on the nature of each study’s group of interest. Depending on the research a similar control group may be established.
• The individual researcher then analyses the data, before applying the relevant disclosure controls to any output. Software used will be SAS, R and Stata; typically this will involve analysis on several outcome measures, risk adjustment and the construction of control groups.
• No record level data would be linked to this dataset (without an explicit separate agreement with NHS Digital), but it may be combined with publicly available demographic or geographic data, for example in relation to local Trust performance
• Outputs consist of aggregate data (or indicator/statistical data) only.
In all such work, The Nuffield Trust analyses patterns of hospital activity by area, by year, by condition or by provider, developing comparative analyses and standardising for a range of episode level, or patient level variables – such as age, the presence of a long terms condition, prior patterns of use. The analyses commonly follow the health and care of a well-defined cohort of individuals over a lengthy period of time. Such analyses require complex processing for fair comparisons and to capture activity for whole populations – something that only nationally collated data can provide.
All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract - i.e. employees, agents and contractors of the Data Recipient who may have access to that data).
The use of this data will be limited to Nuffield Trust for the purposes outlined above only. Data published will be limited to aggregated data, at area, organisational or cohort-level all subject to small number suppression in line with the HES Analysis Guide.
From the date this Data Sharing Agreement takes effect, the following separate Agreements between NHS Digital and the Nuffield Trust will be terminated.
• DARS-NIC-384572-J7P6Y
• DARS-NIC-383324-D6B8T
• DARS-NIC-336478-Z7Q9F
• DARS-NIC-204228-D8J4D
Any ongoing processing of the data for purposes described in the above Agreements, including retention of manipulated data post-analysis, may continue under this Agreement on condition that the processing conforms to the permitted uses described in section 5 above.
Prisoner health: Understanding prisoners healthcare needs, their use of healthcare services and quality of care received — DARS-NIC-195377-M9L8Z
Type of data: information not disclosed for TRE projects
Opt outs honoured: No - data flow is not identifiable, Anonymised - ICO Code Compliant, No (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(2)(b)(ii), Health and Social Care Act 2012 - s261 - 'Other dissemination of information', Health and Social Care Act 2012 - s261 - 'Other dissemination of information'; Health and Social Care Act 2012 s261(2)(b)(ii)
Purposes: No (Research)
Sensitive: Non Sensitive, and Non-Sensitive
When:DSA runs 2018-08-01 — 2021-07-31 2018.10 — 2022.07.
Access method: One-Off, Ongoing
Data-controller type: THE NUFFIELD TRUST FOR RESEARCH AND POLICY STUDIES IN HEALTH SERVICES
Sublicensing allowed: No
Datasets:
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Outpatients
- HES-ID to MPS-ID HES Accident and Emergency
- HES-ID to MPS-ID HES Admitted Patient Care
- HES-ID to MPS-ID HES Outpatients
- Hospital Episode Statistics Accident and Emergency (HES A and E)
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Hospital Episode Statistics Outpatients (HES OP)
Objectives:
The Nuffield Trust is an independent health research charity overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics. The Trust aim to improve the quality of health care that improves the health of people in the UK by providing evidence-based research and policy analysis and informing and generating debate. The Nuffield Trust undertakes work for the public good and within a research governance framework.
In everything the Nuffield Trust do, they strive to be:
• independent and free from vested interests;
• rigorous, robust and evidence-based in the work we undertake;
• relevant, supportive but also challenging when we need to be;
• open and engaging with all those we come into contact with;
• an organisation that makes a difference to the quality of policy-making and practice in the UK.
For the purpose of these legitimate interests, the Nuffield Trust is undertaking the following study:
Prisoner health: Understanding prisoners’ healthcare needs, their use of healthcare services and quality of care received.
Delivery of healthcare in prisons and other secure settings presents unique challenges and it is acknowledged that there is a lack of quantitative evidence regarding healthcare quality in these environments. Ultimately, this research aims to use routine hospital data to better understand the healthcare needs of prisoners, their use of hospital services and how the quality of care for prisoners compares to the non-prisoner population (no specific control cohort will be created for this study).
There are two aspects of the proposed analysis:
1. The Nuffield Trust will explore the potential of two specific HES data fields; ADMISORC (where the patient was before they were admitted to hospital, with options ranging from usual place of residence (home) or other options, such as penal establishment and DISDEST (where the patient was due to go when they leave hospital, with options ranging from usual place of residence (home) to other options such as penal establishment) to reliably identify people in penal establishments who access secondary healthcare services. The Nuffield Trust will look at how many people are recorded as either being admitted to, or returning to a penal establishment from hospital, as well as how this relates to other demographic information such as information about the location of the health care provider (Procode3) as well as LSOA, which is area of residence. This phase of analysis is necessary to assess the accuracy with which these fields are completed, any specific anomalies which may impact on how they are interpreted and therefore the extent to which they can be used to validate the methodology to be applied in the work described under point 2.
Data to be analysed will cover the period 2005/2006 to 2017/18, as 2006 marks the point at which commissioning of healthcare services in prisons in England became the responsibility of the NHS; representing a significant change in commissioning responsibilities.
Please note: This is existing data the Nuffield Trust already holds for separate purposes under a separate Data Sharing Agreement. This Agreement will permit the reuse of a subset of that data and therefore no additional data is required for this aspect of the analysis.
2. Analysis will be undertaken by the Nuffield Trust using prison postcode as a proxy to identify patients from a penal establishment; a methodology which the Nuffield Trust has successfully applied in the context of care home residents in past research.
Based on the findings from a prior phase of analysis which will not involve HES data (consisting of a literature review and conversations with experts in the field), analysis will be undertaken to determine what can be learned about the health of prisoners based on the use of hospital services. This may include analysis relating to specific cohorts of prisoners (for instance, women or young offenders) or looking at specific chronic conditions.
Data to be analysed will cover the period 2017/18.
Please note: The Nuffield Trust already holds the HES data file (disseminated under separate Agreement DARS-NIC-84572-J7P6Y), and therefore the only additional data required is a list of the Nuffield HES ID’s, associated study IDs and EPIKEY/ATTENDKEY/AEKEY* of individuals from the postcode list provided to NHS Digital who are present in HES Inpatient, Outpatient or A&E data in the period 2017/18 respectively. *EPIKEY/ATTENDKEY/AEKEY are record identifiers created by the HES system. Access to these record identifiers will enable identification of where individuals have multiple admissions whilst in the same location.
This research will provide valuable information on the quality of data collected regarding prisoners in routine datasets, as well as the potential for postcode methodology, to accurately identify individuals from prison postcodes accessing secondary care services. It has been acknowledged that there is at best limited quantitative evidence regarding the healthcare needs of prisoners; something this research will provide. If successful, the approach would provide a means of assessing how the healthcare needs of prisoners are changing over time, and the impact of any targeted interventions.
Please note: There are no partner organisations involved in this project; therefore, the data under this Agreement will not be accessed by anyone other than the Nuffield Trust project team.
The project is funded by The Health Foundation, an independent charity committed to bringing about better health and health care for people in the UK.
Expected Benefits:
Since 2009 the Nuffield Trust's research studies, using NHS data, have been widely used to inform decision making and debate in health care. The Trust has held agreements with the NHS to receive patient datasets since. The Nuffield Trust publishes their reports on the Nuffield website and in peer reviewed journals where appropriate.
There are many examples of The Nuffield Trust's work being cited in parliamentary debates and select committees as well as used by national bodies including the Department of Health and NHS England, CQC and Monitor. Many of the projects have been funded by the Department of Health and NHS, and the Nuffield Trust work in partnership with NHS and other care organisations and with universities. The Nuffield Trust has also provided examples of their studies for NHS Digital to use as evidence to the health select committee.
The benefits of The Nuffield Trust's work are seen in terms of decisions made by healthcare commissioners and providers, when thinking about the types of services needed to deliver benefits to patients, as well as by policy makers.
The following provides benefits for the specific project;
It is acknowledged that there is a lack of quantitative evidence regarding healthcare quality in penal environments, and therefore a central benefit of this project is that it will contribute to balancing this evidence gap. In addition, information about prisoners’ healthcare needs, where it does exist, tends to be held locally in silos but the Nuffield Trust project will enable a wider picture of the health of prisoners across England to be evaluated.
The Nuffield Trust will widely disseminate the research findings to policy makers, advocacy groups and experts in the field of prisons and prisoner health to ensure that the impact of the project (and therefore its benefits) are as wide-ranging as possible. Engagement with wider stakeholders is already underway, and in demonstration of the importance placed on achieving the maximum benefits of the project, the Nuffield Trust has built in a six-month window to the project time-line to allow for development of these types of relationships.
An expert panel is being established to spread the benefits within their respective organisations. Members already include representatives from NHS England, CareUK, the RCGP Secure environments group, an Independent Monitoring Board rep, the Howard League, a head of prison healthcare, and academics working in prisoner health research.
Engagement with the expert panel and other experts will ensure that the project findings can feed into the development of national strategies regarding prisoners’ healthcare needs. For instance, the Nuffield Trust has already been approached by a clinician developing guidelines for the care of prisoners requiring dialysis so that the project findings can inform guideline development in this area (expected timeline late 2018/ mid 2019).
It is also expected that the work will be used as an evidence source by advocacy groups to highlight healthcare issues faced by prisoners. As an example, the Nuffield Trust has already been approached by the Queen’s Nursing Institute (the QNI Support health professionals to provide better healthcare for people in prison) Homeless health programme to include a link to the project introductory blog in their News update which is shared with 1500 contacts nationally (due to be released May/June 2018).
The Nuffield Trust will also submit articles for publication in peer review journals (Mid 2019) so that the approach adopted can be replicated in future by others to continue to assess quality in prison healthcare.
Outputs:
All outputs will be aggregate with small number suppressed in line with the HES Analysis Guide.
Anticipated dates of study reports are listed. All may also include presentational web material (for example slideshows and blog posts), in addition to presentations given in person at relevant research or policy conferences, etc.
December 2018: Phase I progress report
This will be an interim report to the funders, the Health Foundation – reflecting the key findings from Phase I (non-HES based analysis) and confirming the approach to be adopted in Phase II, the HES based analysis. It will outline the selection of the outcome measures of prison healthcare quality selected for examination in the Phase II quantitative analysis. This will include background literature on measures of healthcare quality in prisons as well as feedback from the expert panel. The expert panel includes individuals working within prison and prison health who are supporting the project.
July 2019: Final report and summary
This will be the final report to the funders, the Health Foundation. It will provide details of the findings emerging from the phase II HES based analysis.
July 2018, December 2018 and July 2019: Meetings of the expert panel.
Throughout the projects there will also be blogs and briefings to publicise the research and promote key findings. Two introductory blogs for the project have already been published:
Davies M (2018) "Numbers matter in prison", Nuffield Trust comment. https://www.nuffieldtrust.org.uk/news-item/numbers-matter-in-prison
Davies M (2018) "Us and them: the impact of prejudice on prisoners’ health care", Nuffield Trust comment. https://www.nuffieldtrust.org.uk/news-item/us-and-them-the-impact-of-prejudice-on-prisoners-health-care
Papers will be submitted for peer reviewed journal publication in the summer 2019.
Processing:
The data will only be accessed and processed by “Personnel” (as defined within the Data Sharing Framework Contract i.e; employees, agents and contractors of the Data Recipient who may have access to that data) and only for the purposes described in this application.
Whilst the nature of detailed analysis varies, the broad context of processing is in summary:-
1. The data is downloaded from NHS Digital and imported into SAS. The server is held on-site, and access is restricted to named individuals according to The Nuffield Trust's Information Security Management System (ISMS).
2. The data is held within separate folders on a dedicated research server.
3. Remote access to the database is permitted, but only through Citrix via secure token (so processing is still carried out on site), and with local printing and downloading disabled.
4. Only individuals who have signed a confidentiality agreement and have received Information Governance training are permitted access.
5. All access to individual files is recorded, and a sample audited to investigate the existence of any adverse incidents and ensure that appropriate access has been maintained.
6. Once held in SAS, the researcher will view the data and undertake descriptive analysis – such as reasons for admission, length of stay and associated co-morbidities. Based on the findings of the Phase I literature review, focused analysis will be undertaken relating to specific cohorts of prisoners (for instance, women or young offenders) or looking at specific chronic conditions. The researchers will use routinely available filter definitions where possible but may amend these based on the nature of the study's group of interest.
7. Comparisons will be made based on the standardised national rates for age and sex bands. E.g. national rates of emergency admissions would be used to construct expected rates of emergency admissions within the prison cohort. The Trust is able to then compare the prison cohort against national standardised rates.
8. The individual researcher then analyses the data, before applying the relevant disclosure controls to any output. Software used will be SAS, R and stata. Typically this will involve analysis on several outcome measures, risk adjustment and the construction of control groups.
9. No record level data would be linked to this dataset, but Locally sourced Escort and Bedwatch (E&B) data from a sample of prison establishments will be used as a means of validating the volume of cases emerging from the HES postcode-based analysis. E&B data is based at an individual prison level and is essentially a record of prisoners moved to or from hospitals whether for urgent or unplanned care and the associated cost.
Please note: E&B data contains no individual information about prisoners (such as their name, prisoner number or age). It is purely a record of the number of transfers and reasons for transfers. The Nuffield Trust will not be attempting to link this to HES data – it is purely being used to determine if the volume of cases emerging from the HES data reflects the volume of cases recorded for financial monitoring. This is important cross validation which will strengthen the HES based analysis.
10. Outputs are thus produced which consist of aggregate data (or indicator/statistical data) only.
For the postcode-based aspect of the analysis, the Nuffield Trust will provide NHS Digital with a list of addresses (including postcode) of all prison establishments in England (n=118) in addition to a study identifier for each location. In return, NHS Digital will provide a list of the Nuffield HES ID’s, associated study IDs and EPIKEY/ATTENDKEY/AEKEY of individuals from the postcode list provided who are present in HES Inpatient, Outpatient or A&E data in the period 2017/18.
Please note: No local datasets will be sent to NHS Digital – purely a list of the prison addresses.
The datasets necessary for the study are listed below:
Data required:
1. 2005/2006 – 2017/18 APC
Using a subset of data held by the Nuffield Trust under Agreement DARS-NIC-84572-J7P6Y, the Trust will explore the reliability of ADMISORC and DISDEST in a preliminary phase of analysis.
The Nuffield Trust has undertaken some preliminary tests and has confidence that the outcome will be the identification of prisoners only. As with using any data set, there are risks involved, but a number of controls are in place to confirm that only prisoners are identified. The Nuffield Trust intends to feedback to NHS Digital in a meaningful way on whether the initial postcode approach fails at a secondary control. See below for a summary of the controls.
Factors which minimise the risk:
1. The use of the prison postcode is an initial safeguard, as prison postcodes relate just to individual prisons and therefore people in nearby residential accommodation will not be included based on having a shared postcode. Examples of this that have been checked include:
- HMP Belmarsh (SE28 0EB); HMP Thameside (SE28 0DF); and HMP/YOI Isis (SE28 0FB) are all located on the same site (Western Way, London) but have different postcodes
- HMP Wandsworth (SW18 3HU) postcode is separate to those of neighbouring houses on Heathfield Square.
- HMP Bronzefield (TW15 3JZ) – nearest road is Ruggles-Brise Road, which has a postcode of TW15 3LD / 3LF.
- HMP/YOI Feltham (TW13 4ND) – this is on Bedfont Road, and even the visitors centre has a different postcode (TW13 4NP).
2. If a prison officer has an injury which requires them to go to Hospital, they are identifiable only by their home postcode within HES, which the Nuffield Trust will not have access to, and as their home postcode will not be the prison, their data will not be captured using the prison postcode methodology.
Additional steps:
1. Sensible cross-checks will be undertaken such as making sure HESIDs linked to male prisons do not include details for females, and vice versa. Similarly, Young Offender Institutions or Secure Training Centres would not be expected to include HESIDs for individuals above the age range threshold for such establishments.
2. A small number of prisons have accommodation for staff onsite. It is unlikely that such accommodation would be staff members’ full time permanent residence but to minimise the likelihood of any prison staff being included within the dataset diagnostic codes will be examined to look for reference to admissions related to ‘Problems related to employment and unemployment’, as well as the sorts of checks identified under point 1.
Finally, as with all our reporting, small numbers will be suppressed and so no individual officers (or prisoners for that matter) will be identifiable in reporting.
2. 2017/18 APC, OP, A&E, HES Data.
Please note: The only additional data required is a list of the Nuffield HES ID’s, associated study IDs and EPIKEY/ATTENDKEY/AEKEY of individuals from the postcode list provided to NHS Digital who are present in HES Inpatient, Outpatient or A&E data in the period 2017/18.
Additional note - third parties:
The Nuffield Trust will not provide access to record level data for any unnamed third parties, even where these third parties are study partners. The use of this data will be limited to the Nuffield Trust for the purpose outlined above only. Data published or provided to third parties will be limited to aggregated data, at area, organisational or cohort-level all subject to small number suppression in line with the HES Analysis Guide.
Wavex Technology provide Nuffield Trust with services of managed IT services. They currently have domain level credentials but not access to the data with their accounts. They do not process or store data including NHS Digital data. Wavex have signed an updated contract with Nuffield stating: “Recipient undertakes, not to access sensitive research data residing on Nuffield Trust’s Research hardware. Any attempt by recipient’s employee to access the data, either through bypass of the security features, or amendments to the security settings would be seen as a material breach of the contract and could result in immediate termination to their contract.”
Data Protect UK provide Nuffield Trust with services of storing encrypting backup tapes at their storage facility for the purposes of disaster recovery. Data Protect UK do not have access to the NHS Digital data on the tapes.
The Nuffield Trust shall ensure access to data disseminated by NHS Digital is strictly prohibited and must not be accessed by the Trust’s IT Managed Services Provider.
Retrospective analysis of the impact of Royal Voluntary Service Home from Hospital scheme on NHS hospital use. — DARS-NIC-86623-P4F4D
Type of data: information not disclosed for TRE projects
Opt outs honoured: N, Anonymised - ICO Code Compliant (Does not include the flow of confidential data)
Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(2)(b)(ii)
Purposes: No (Research)
Sensitive: Non Sensitive, and Non-Sensitive
When:DSA runs 2018-04-01 — 2021-03-31 2017.09 — 2017.11.
Access method: One-Off
Data-controller type: THE NUFFIELD TRUST FOR RESEARCH AND POLICY STUDIES IN HEALTH SERVICES
Sublicensing allowed: No
Datasets:
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Outpatients
- Hospital Episode Statistics Accident and Emergency (HES A and E)
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Hospital Episode Statistics Outpatients (HES OP)
Objectives:
The Nuffield Trust’s overarching purpose is to help provide objective research and analysis that boosts the quality of health policy and practice, and ultimately improves the health and health care of people in the UK. The Nuffield Trust are an independent research group overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics.
This application relates to a piece of evaluation work the Nuffield Trust is undertaking funded Royal Voluntary Service (RVS) to evaluate their ‘Home from Hospital’ programme in Leicestershire.
In order to do this the Nuffield Trust propose using linked data to compare the outcomes for project beneficiaries versus a matched control group who did not receive the scheme’s services. The primary outcome measures will be hospital activity in the period after referral to the scheme.
The Nuffield Trust have a successful track record in such studies – most recently in the evaluation of the Cabinet Office and NHS England funded scheme to test the impact of volunteers on hospital utilisation. This work will add to the growing evidence base on the effectiveness of increasingly common programmes in use in the English NHS.
The Hospital from Home scheme commenced in October 2014 and runs into early 2017. The key output of the Nuffield Trusts work will be an independent assessment of the strength of evidence that RVS’s scheme has any favourable impact on older people’s use of hospital services.
The Nuffield Trust will not be sharing any data with any third party. All published or otherwise shared information will aggregated data with small numbers suppressed in line with the HES Analysis guidance.
The Royal Voluntary Service was founded in 1938 to support local communities. With over 35,000 volunteers, their aim is to help older people stay active, independent and able to continue to contribute to society.
Yielded Benefits:
This work has been delayed by approximately 6 months. At present the Nuffield Trust are actively working on the analysis but no outputs have yet been produced. The revised planned end date is late summer 2018.
Expected Benefits:
The Nuffield Trust evaluation will provide an independent assessment of the impact of RVS’s Home from Hospital Scheme. This scheme aims to use volunteers and voluntary sector staff to help support older people’s timely discharge from hospital wards. It is one of a number of similar schemes increasingly being commissioned by local authorities, CCGs and acute trusts in England.
The evidence the Nuffield Trust provide will be of benefit to these commissioners, both in England and beyond, as they consider funding these types of services over others on a longer-term basis. It may also provide new information for RVS and other charities about specific aspects of their scheme that appear to provide the greatest benefits.
The evaluation itself will measure the impact of the schemes on hospital usage: including emergency admissions, re-admissions, length of stay and A&E attendances over ~9 to 12 months post referral.
Evidence of the success or failure of the service will be beneficial to patients in the wider sense that if such schemes are shown to lead to improved care after admission to hospital, similar schemes will be more likely to receive funding from local commissioners elsewhere. The Nuffield Trust analyses may help these schemes identify specific subgroups of individuals who might be best targeted for care.
This study will be a useful addition to a growing set of Nuffield Trust evidence on the impact of the voluntary sector on use of the acute sector in England: evaluation of British Red Cross ‘Support at Home’ scheme (2012); evaluation of a Cabinet Office ‘social action’ fund (2016), evaluation of Age UK’s Integrated Care Programme (findings due 2017).
Outputs:
The prime analytical outcome of the Nuffield Trust data processing will be the identification of a group of people (within the HES data) who had extremely similar characteristics to the five projects’ service recipients, but who didn’t receive a service. For example if 1,500 people by early 2017 received a service from RVS, Nuffield will have identified this group in HES data, in addition to another 1,500 individuals to be used as our evaluation’s matched control group.
Differences between these two groups in terms of their subsequent use of hospital services will be analysed to test whether there is any evidence that the services have had any impact on admissions to hospital or lengths of stay, adjusting for remaining differences between the two groups.
An evaluation report will be submitted to RVS in the second half of 2017. Shortly afterward, the Nuffield Trust will publish the results in a brief Nuffield Trust branded research report, possibly as part of a summary document reviewing all Nuffield Trust recent analyses of the impact of voluntary sector lead schemes. This will be made freely available on the Nuffield Trust website. The Nuffield Trust may also submit the findings to quality peer reviewed journals.
Processing:
The role of NHS Digital:
NHS Digital will receive identifiable person level information from RVS.
The person level information received by NHS Digital will cover all people recruited to the programme between October 2014 and early 2017, where those individuals have consented to sharing data with NHS Digital for evaluation purposes (subsequently referred to as service recipients).
The transferred information will consist of only:
• NHS number (if available)
• Name
• date of birth
• address including postcode
• gender
in addition to a non identifiable client ID added by the services to denote each unique individual.
NHS Digital will receive no other information about any service recipient.
This data will be transferred to NHS Digital using the NHS Digital’s own secure transfer facilities, under NHS Digital advice.
NHS Digital’s Data Linkage Service will process the person identifiers. For each service recipient, they will find the relevant pseudonymised identifier, the HESID, in the form held by the Nuffield Trust.
The Data Linkage Service will produce a file intended for the Nuffield Trust. This file will contain the HESID of each service recipient, alongside other limited pseudonymised information:
• LSOA of residence,
• age (/year of birth)
• gender.
It will also include information about the matching technique, and the non identifiable client ID.
NHS Digital will finally transfer this file securely to the Nuffield Trust.
Role of NHS Digital summary: NHS Digital will receive personal identifiers of people recruited to the RVS programme and will provide the relevant pseudonymised HESIDs of these individuals to the Nuffield Trust.
The role of the Nuffield Trust
The Nuffield Trust will receive from NHS Digital the list of HESIDs of people recruited to the services between October 2014 and early 2017 (service recipients).
The Nuffield Trust will receive at the same time a dataset from RVS. This dataset will contain no identifiable information, and will only contain the non identifiable client ID as a person identifier.
Other data contained in these files will include non identifiable details of services received by the people recruited to these services, eg date of referral to the service provider, number of minutes of support received, dates of services provided, etc.
As a first processing step the Nuffield Trust will link the HESIDs (from NHS Digital) and the non identifiable service information (from the seven service providers) using the non identifiable client ID.
The Nuffield Trust will then link this data to pseudonymised HES data and monthly MMES.
For each service recipient the Nuffield Trust will link to up to two years of HES data for the period just prior to the referral to the service provider. The Nuffield Trust will also link to all subsequent HES activity captured using the latest monthly HES datasets.
Therefore the Nuffield Trust will need to link to HES/MMES APC, OP and A&E data from 2012/13 through to 2016/17 (M13).
Using this data the Nuffield Trust will build person level analysis datasets which will characterise each service recipient in terms of: demographic characteristics, history of hospital use, and morbidity characteristics.
The key aim of the Nuffield Trust processing is to find a matched group of people who very closely share these same characteristics, but who did not receive a service from RVS, and to use this group as a pseudo-control group.
To do this the Nuffield Trust will build analysis datasets for the wider group of people in the hospital in which RVS’s services were offered but where the individuals did not receive a service, or for very similar hospitals, as defined by predictive risk models.
From within this group the Nuffield Trust will use prognostic matching and risk modelling techniques to find a ‘closest match’ control cohort for each of the seven intervention cohorts.
Once the Nuffield Trust have identified the matched control groups, the Nuffield Trust will analyse all subsequent hospital activity – following recruitment to the service - comparing the behaviour of the intervention group (the actual service recipients) to the matched control group.
The Nuffield Trust will focus especially on differences between the two groups in terms of emergency hospital admissions, readmissions, lengths of stay and A&E attendances.
Role of Nuffield Trust summary: The Nuffield trust will identify characteristics of all RVS service recipients using HES data from the period prior to recruitment to the service. The Nuffield Trust will find very closely matched control groups, from the wider population. The Nuffield Trust will finally test for differences in subsequent hospital activity between the service recipients and the matched control group.
Only substantive employees of the Nuffield Trust will have access to the data and only for the purposes described in this document.
Note about third parties: At no point will person level data be transferred from the Nuffield Trust to any other external organisation. All information published and/or passed to partner organisations will be aggregated with small numbers suppressed as required in HES guidance.
The Nuffield Trust shall ensure access to data disseminated by NHS Digital is strictly prohibited and must not be accessed by Wavex Technology.
The care of frail older people, and the role of the Comprehensive Geriatric Assessment (Refs: NIC-383324-D6B8T, previously HESR019) — DARS-NIC-383324-D6B8T
Type of data: information not disclosed for TRE projects
Opt outs honoured: Y, Identifiable, Anonymised - ICO Code Compliant
Legal basis: Health and Social Care Act 2012, Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007; Health and Social Care Act 2012 s261(7), Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), , Health and Social Care Act 2012 s261(2)(b)(ii), Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007 ; Health and Social Care Act 2012 s261(7)
Purposes: No (Research)
Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive
When:DSA runs 2018-05-01 — 2021-04-30 2017.06 — 2017.08.
Access method: One-Off
Data-controller type: THE NUFFIELD TRUST FOR RESEARCH AND POLICY STUDIES IN HEALTH SERVICES
Sublicensing allowed: No
Datasets:
- Hospital Episode Statistics Admitted Patient Care
- Civil Registration (Deaths) - Secondary Care Cut
- Patient Reported Outcome Measures (Linkable to HES)
- Unmatched
- Civil Registrations of Death - Secondary Care Cut
- Hospital Episode Statistics Admitted Patient Care (HES APC)
Objectives:
The Nuffield Trust is an independent research group chaired by Andrew McKeon and overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics. The Nuffield Trust undertake work for the public good and within a research governance framework.
In these studies Nuffield Trust are seeking to improve the NHS’s ability to identify and implement good practice in terms of efficient and effective health care for patients.
The projects are:
• Surveillance of outcomes and health service use for frail older people. This work is aiming to develop better indicators to identify good quality provision of care for older people. The focus of the first is to help the NHS spot effective care via innovative use of linked person-level datasets. The Nuffield Trust will try to identify areas of the country that are caring well for those aged over 65 with long term conditions and multiple co-morbidities. The project will develop new measures that make use of care pathways to provide a more sophisticated classification of patient types. The metrics will then be applied to the whole country to identify areas in England where the care pathways seem better than expected in terms of promoting better quality of care for older people. These areas will then be explored using qualitative methods to assess the nature of the successful service.
• An evaluation of the Comprehensive Geriatric Assessment (CGA) – Nuffield Trust were co-applicants with the University of Newcastle, and the work funded by the NIHR. The CGA is a multidisciplinary process designed to assess a frail older person’s medical conditions, mental health, functional capacity and social circumstances. However information is lacking on the types of patients that might benefit the most. The aim of this work is to describe existing models of care and to validate tools to deliver CGA on a hospital wide basis. No record level data is provided to the University of Newcastle.
Older people are the major users of acute hospitals, yet there is a growing perception that care for older people is sub-optimal (Patient’s Association report 2011, Health Service Ombudsman’s report 2011). Comprehensive geriatric assessment (CGA) is defined as ‘a multidimensional, interdisciplinary diagnostic process to determine the medical, psychological, and functional capabilities of a frail older person in order to develop a coordinated and integrated plan for treatment and long-term follow-up’. CGA improves outcomes for frail older people, including survival, cognition, quality of life and reduced length of stay, readmission rates, long term care use and costs.
CGA is the accepted gold standard method of caring for frail older people in hospital, documented in numerous randomised controlled trials and associated systematic reviews and meta-analyses. It is unclear, however, which types of patients benefit most and how CGA should best be targeted to achieve maximum impact.
In addition, individual patient characteristics and frailty markers that best predict improved outcomes from CGA is unknown. It is essential that factors identifying benefit can be derived from routine hospital data to facilitate service level evaluation of health outcomes and health and social care costs, but the feasibility of this is unknown. The number of people who might benefit from CGA is estimated to be between 15-50% of older inpatients, based on the prevalence of cognitive dysfunction as a marker for frailty.
This work will therefore explore clinical markers of frailty that are quick and simple to use, and can map to larger datasets from a health and social care perspective. This in turn will provide accurate data on the numbers involved in different hospital settings which are required to plan and resource appropriate models of service for the projected increasing admissions of older people to hospital.
Both studies will rely on analysis of older individuals who are likely to be frail and have multiple long term conditions. Information on mortality will be important for such a group, as death rates for specific subgroups are likely to be high.
PROMs data are requested so that Nuffield Trust would be able to carry out appropriate statistical analyses to help explore how well the results of the pre- or post-operative questionnaires correlate with proxy outcomes from HES. Although the PROMs data focus on patients awaiting one of the relevant procedures, Nuffield Trust expects to be able to make inferences about the general applicability of our results to the older population across England, as appropriate.
Analyses of linked HES, ONS and clinical datasets are part of a wider project to evaluate interventions to improve care of frail older people aged over 75 in hospitals. The analyses are focused on developing tools for identifying people who are frail in hospitals, understanding the implications of frailty for individuals and the health service, and quantifying the benefits of better care, namely “comprehensive geriatric assessment” which is an integrated management approach.
Date of death is required because survival is an important outcome for people over 75, it is common (up to half of frail older people die over a two year period), and it is a key indicator of the quality of care. It also has major implications for use of hospitals, which increases at end-of-life and is necessary to estimate the impacts of frailty on hospital use, as well as the potential effects of better care.
The Nuffield Trust wish to convert date of death into an anonymised form of the data, such as week of death, or mortality within specified time-frames from hospital admission to further aggregate the data.
Yielded Benefits:
The Nuffield Trust have contributed to a final NIHR report for the Hospital Wide (HoW) CGA study which will be submitted for peer review at the end of January, with publication expected in late 2018. This report will include a tool (excel based, reliant only on aggregated data with small numbers suppressed) for local NHS use - to determine how many people in an area might benefit from CGA. A paper on the development of a frailty risk score for older people in acute care was submitted to a peer reviewed journal in November 2017 and a decision is pending. Further papers for peer reviewed journals are planned including one focusing on long term outcomes of frailty in the community and one focused on hospital based populations. These are expected to be submitted to peer reviewed journal in Spring 2018.
Expected Benefits:
The benefits of the work are seen in terms of decisions made by healthcare commissioners and providers, when thinking about the types of services needed to deliver benefits to patients, as well as by policy makers.
• Surveillance of outcomes and health service use for frail older people
The frail older people work is aiming to develop better indicators to identify good quality provision of care for older people. The work consists of devising and testing new metrics - some of which are drawn from HES data - and then validating these in a number of ways:
- by identifying characteristic areas of good practice;
- by matching outcomes with PROMs;
- by engaging with a number of key experts in the field with whom the Nuffield Trust already have existing links, including via the CGA project that is also mentioned in this application.
In the long term the Nuffield Trust anticipate that the metrics they develop will be used by the care system to monitor and to promote good quality care for older people. Some of this will be integrated with the CGA project and benefit from the methods for dissemination outlined below.
Alongside the reports and peer-reviewed papers, key outputs will be tools that can be applied locally for looking at changes over time which will be supported by web-based materials. These tools will enable decision makers use their own data to monitor key outcome measures over time to identify, for example, whether new care initiatives are improving outcomes or quickly spot sudden deteriorations so that they can be acted upon in a timely fashion. The Nuffield Trust are known experts in this field: for example, the Trust currently have a request from NHS England for work in this area.
• Comprehensive Geriatric Assessment (CGA) evaluation.
The Nuffield Trust’s analyses and project deliverables will contribute to a much more detailed understanding of current models of inpatient care for older people in the UK. The Nuffield Trust will also improve the clarity of definition of the key elements of CGA and its use in hospital settings. Outputs will include a means of evaluating services for frail older people using HES data, a methodology for assessing the relationship between frailty markers and long-terms patient outcomes and costs, and a set of tools that will facilitate service redesign and long-term planning for commissioners (see below).
The Nuffield Trust will use a range of new and existing organisations to support the dissemination of finding from the project, for example Clinical Commissioning Groups (CCGs), NIHR Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) (team members are involved with two CLAHRCs currently and have excellent networks with the remaining seven across England), and Academic Health Science Networks (AHSNs). AHSNs will play a pivotal role in promoting the uptake of innovation and best practice and the team will work with the AHSNs to promote adoption and spread of best practice recommendations and the use of resources to support change arising from the findings of the project.
The Nuffield Trust will produce a population based report in mid to late 2017. This will include a tool (Excel or web based, reliant only on aggregated data with small numbers suppressed) for local use – to determine how many people in an area might benefit from CGA. The tool will be freely available for use by any interested member of the public (not just commissioners), via download from the Nuffield Trust’s website. The tool will only consist of aggregated data derived from HES and will not use ONS data.
A further report about the relation of frailty measures to admissions will be produced in late 2017 early 2018.
The outputs of the above tool will be combined with a series of health system performance measures that relate specifically to the care of frail older people at area and provider level. These performance metrics, combined with the estimated number of CGA beneficiaries, will allow the Nuffield Trust to estimate the numbers, outcomes, resource use and costs for this group of service users. These estimates will then be used to produce the final “What if” interactive models to be provided to service providers and commissioners, allowing them to explore the scope for modifications to services to (for example) reduce costs or service utilisation, or evaluate the effectiveness of service interventions targeting the frail cohort. Specifically, the final tool would demonstrate the relationship between the scale of patient benefits, resource use and costs based on variable assumptions concerning: numbers receiving CGA, patient type and risk, and relative effectiveness.
In addition, which individual patient characteristics and frailty markers best predict improved outcomes from CGA are currently unknown. It is essential that factors identifying benefit can be derived from routine hospital data to facilitate service level evaluation of health outcomes and health and social care costs. The number of people who might benefit from CGA is estimated to be between 15-50% of older inpatients. Accurate data on the numbers involved in different hospital settings are required to plan and resource appropriate models of service for the projected increasing admissions of older people to hospital. These tools will permit commissioners to plan and resource accordingly.
In addition, by analysing differences between patients recorded as receiving CGA and those who are not, Nuffield Trust will also be able to evaluate the effectiveness of the CGA intervention, in terms of cost and patient outcomes, and also characterise groups of elderly patients who are most likely to benefit from CGA.
Outputs:
All outputs will be aggregate with small number suppressed in line with the HES Analysis Guide.
Anticipated dates of study reports are listed. All may also include presentational web material (for example slideshows and blog posts), in addition to presentations given in person at relevant research or policy conferences, etc.
• Surveillance of outcomes and health service use for frail older people
The Nuffield Trust anticipates producing a Nuffield Trust final research report to be available in mid to late 2017. At the same time, the Nuffield Trust also aims to produce papers for peer-reviewed journals such as BMJ Quality and Safety and Age and Ageing, as well as a paper targeted towards a more methodological journal. The Nuffield report will be placed in the public domain, and will contain data at no greater granularity than aggregate with small numbers suppressed.
• Comprehensive Geriatric Assessment (CGA) evaluation.
The Nuffield Trust will produce a population based report in mid to late 2017. This will include a tool (excel or web based, reliant only on aggregated data with small numbers suppressed) for local NHS use – to determine how many people in an area might benefit from CGA. A further report about the relation of frailty measures to admissions will be produced in late 2017 early 2018.
This HESIDs will enable the primary outputs of the research programme to be generated. Specifically Nuffield Trust will be able to determine the extent to which clinical frailty scales predict short, medium and longer term hospital use, survival, the frequency of emergency events and costs related to health activity.
Processing:
Only substantive employees of the Nuffield Trust will have access to the data and only for the purposes described in this document.
The ONS data will be processed in accordance with the standard ONS terms and conditions.
Data will be matched to the pseudonymised/non-sensitive HES data held by the Nuffield Trust under existing agreement NIC-384572-J7P6Y.
The NHS Digital technical team will provide the requested datasets using Nuffield Trust’s encryption to enable them to link the data with the HES data they already hold.
• Surveillance of outcomes and health service use for frail older people. Specific elements of the work will;
1. Develop a series of metrics (indicators), from routinely collected data that reflect the quality of care of older people.
2. Validate those metrics against patient reported health status and clinical databases.
3. Use the validated metrics as surveillance indicators to find regions of high quality care of older people
4. Confirm the surveillance findings by partnering with the relevant authority to understand the local context
5. If evidence of high quality care is established then an in-depth qualitative analysis will be performed to detail the local arrangements and assess the potential for transferability
• Comprehensive Geriatric Assessment (CGA). Specific elements of the work will;
1. Identify the characteristics of recipients of CGA in existing settings
2. Identify the characteristics of those who appear to benefit from CGA
3. Stratify local populations to test who might benefit from CGA more widely
4. Develop interactive tools for providers and commissioners to explore scope for service modifications
5. Assess the relationship between frailty markers (recorded and proxy) and long term care outcomes
Amendment (data linkage update) for CGA analysis:
NHS Digital will receive identifiable person level information from each one of three universities (Newcastle University, Southampton University and Nottingham University) who hold detailed clinical datasets relating to frail older people, containing clinical frailty markers and whether the patient received CGA.
The transferred information will consist of only: NHS number, full name, date of birth and address including postcode, in addition to a non identifiable linkage ID. This data is required in order to ensure a robust match at NHS Digital to ensure a high standard in data quality. NHS Digital will receive no other information about any service recipient.
This transfer of information to NHS Digital will occur just once. It is anticipated that there will be 2,000 individuals in total.
This data will be transferred to NHS Digital using NHS Digital’s own secure transfer facilities, under NHS Digital advice.
NHS Digital will process the person identifiers. For each service recipient, they will find the relevant pseudonymised identifier, the HESID, in the form held by the Nuffield Trust.
NHS Digital will produce a file for the Nuffield Trust. This file will contain the HESID of each service recipient, alongside other limited pseudonymised information: LSOA of residence, age and gender. It will also include information about the matching technique, and the non identifiable linkage ID.
NHS Digital will finally transfer this file securely to the Nuffield Trust.
The data received from NHS Digital will then be linked, via the non-identifiable linkage ID provided by the sites, to the de-identified clinical datasets held by the Nuffield Trust, and to HES and ONS mortality data via the HESID.
Additional note – third parties
The Nuffield Trust are not seeking permission for any third parties to access these data, even where these third parties are study partners. The use of this data will be limited to Nuffield Trust for the purposes outlined above only. Data published or provided to third parties will be limited to aggregated data, at area, organisational or cohort-level all with small numbers suppressed in line with HES analysis guide.
The Nuffield Trust will perform its analyses using statistical software including SAS, R and stata.
The Nuffield Trust shall ensure access to data disseminated by NHS Digital is strictly prohibited and must not be accessed by Wavex Technology.
Project 8 — DARS-NIC-384572-J7P6Y
Type of data: information not disclosed for TRE projects
Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)
Purposes: ()
Sensitive: Non Sensitive
When:2017.06 — 2017.02.
Access method: Ongoing
Data-controller type:
Sublicensing allowed:
Datasets:
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Outpatients
Objectives:
The Nuffield Trust is an independent research group overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics. The Nuffield Trust undertakes work for the public good and within a research governance framework.
The purposes for receiving HES data falls into the following categories :-
1. Evaluations of the impact of innovations in health and social care on hospital utilisation
In an effort to improve the quality of health care and reduce the financial pressure on the NHS, efforts are being made to deliver more care in community settings, with the aim of preventing unnecessary and expensive admissions to hospital. The Nuffield Trust is developing methods to evaluate how well these interventions perform.
The projects are:
• Evaluation of the Integrated Care ‘Pioneers’. These are models of care aimed at reducing the impact of boundaries between care providers. This work is in partnership with the DH Policy Innovation Research Unit based at the London School of Hygiene and Tropical Medicine.
• Evaluation of new models of primary care. This is an evaluation of selected ‘scaled up’ GP practices, to explore development of new general practice organisations.
• Evaluation of a local scheme to deliver improved care for complex cases – as part of the PM’s Challenge Fund in Barking, Havering and Redbridge (funded by PM’s Challenge Fund).
Additional projects may be added to this list but will be subject to an amendment to this agreement being approved by NHS Digital.
2. Research studies involving the surveillance of patterns in hospital admission and costs at area level in England, aimed at identifying areas where innovation in service delivery is taking place.
In these studies The Nuffield Trust are seeking to improve the NHS’s ability to identify and implement good practice in terms of efficient and effective health care for patients.
The projects are:
• A DH funded project to look at ways to identify people who suffered avoidable serious harm. This will test whether HES data can be used as a screening tool to identify cases for specific audit. This work will be undertaken in conjunction with the London School of Hygiene and Tropical Medicine and Imperial College London.
• Patterns of urgent care use related to the development of ambulatory emergency medicine, a new approach being adopted in hospitals around the country. The Nuffield Trust will look at the impact on patterns of acute hospital use and long terms outcomes for patients. Update May 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes).
• An assessment of the impact of alcohol on hospital services. This study aims to evaluate whether alcohol is an increasing burden on acute hospital services, will attempt to identify geographical areas where hospital alcohol teams are working well and aims to share opportunities identified for improvement. UPDATED INFORMATION OCT 2016 : This project is now closed and no longer requires the processing data for this use (apart from auditing purposes).
Additional projects may be added to this list but will be subject to an amendment to this agreement being approved by NHS Digital.
3. Research studies relating to the efficiency of health services and level of competition in the English NHS.
The projects:
• Descriptions of differential patterns of hospital use (admissions, lengths of stay, child health indicators) by area and provider. This work aims to identify good practice in the efficient use of hospital resources.
4. Linkage of HES data to linked datasets provided by NHS Digital
A number of other projects require access to HES data, but also make use of a linked dataset such as HES-ONS. These are subject to separate applications to NHS Digital, but would not require a separate data release. Instead the applicant would make use of the data provided under this agreement. Such projects typically cover 10 years of HES data.
5. Linkage of HES data to HES ids provided by NHS Digital regarding a specific cohort.
Such uses would again be subject to separate data agreements, since they would have a different legal basis and potentially involve patient consent. They would be considered separately under different applications but would not require a separate data release.
6. Informing the public debate about hospital use
The Nuffield Trust regularly acts to improve the quality of public debate on use of hospital services by publishing responsive research, which helps focus the debate on evidence. Trigger for this work include a specific issue suddenly coming to national prominence, or an individual or organisation making an assertion which is easily tested using data already available. As an independent research organisation and registered charity, with independence from party politics overseen by the board of trustees, such interventions are carefully considered to ensure that an evidence-based statement may add value to the overall debate. They are not provided at the request of any individual organisation.
7. Evaluations of the impact of innovations in health and social care on hospital utilisation
In an effort to improve the quality of health care and reduce the financial pressure on the NHS, efforts are being made to deliver more care in community settings, with the aim of preventing unnecessary and expensive admissions to hospital. The Nuffield Trust is developing methods to evaluate how well these interventions perform.
The project involves an evaluation of Virtual Wards in Devon. This study aims to evaluate a multidisciplinary care management scheme which was delivered to individuals in their homes. This work is intended to follow up an earlier study funded by NIHR which was only able to capture the first hundred patients admitted to the Virtual Ward. Over subsequent years, six thousand individuals have been admitted to the scheme. These were chosen as they were judged to have a high risk of hospitalisation. Nuffield will test whether the post-Virtual Ward hospital admissions were low within this group, compared to a similar cohort of people from other parts of the country selected from HES. UPDATED INFORMATION OCT 2016: This project is now closed and no longer requires processing of the data for this use (apart from auditing purposes).
8. Research studies involving the surveillance of patterns in hospital admission and costs at area level in England, aimed at identifying areas where innovation in service delivery is taking place.
In such studies The Nuffield Trust are seeking to improve the NHS’s ability to identify and implement good practice in terms of efficient and effective health care for patients.
The project involves evaluating the implementation of Quality Standards in the London region, which were developed and introduced to reduce variability in and improve patient care. The study aims to:
- investigate variation in outcomes and adherence to standards across London
- determine if there is an association between degrees of standard implementation and outcomes
- evaluate innovative outcome measures to investigate the impact of standards on patient care and for monitoring standard adherence
UPDATED ADDITIONAL PROJECT information OCT 16
The following describes new projects the Nuffield Trust are requesting access to HES data for;
9. Research studies identifying models of medical generalism used in smaller hospitals and exploring their strengths and weaknesses in treating older and more complex patients from patient, professional and service perspectives.
The rising numbers of older and more complex patients is considered to be one of the most pressing problems facing the NHS. Although they receive the most resource-intensive care, their problems are less likely to be accurately diagnosed and have more adverse outcomes than other age groups. The emerging consensus is that current models of hospital care, which are heavily based around specialists delivering disease-specific care, serve these patients poorly, as it is often fragmented and poorly co-ordinated. A revival of medical generalism has been suggested to provide better and more cost-effective care. The reality, however, is that there is a paucity of evidence on which to base new models of medical generalism. Smaller hospitals provide an ideal environment in which to investigate models of medical generalist care, as their patient population is older and more vulnerable, while their size creates constraints on their income, capacity and staffing.
The overarching aim of this research, therefore, is to identify the models of medical generalism used in smaller hospitals and explore their strengths and weaknesses from patient, professional and service perspectives. More specifically, Nuffield Trust will be using HES data to create a classification of patients that might benefit from general medical care and, based on this classification, provide a descriptive analysis of the workloads of smaller hospitals.
10. Classifying readmissions and comparing readmission rates between the Netherlands and the UK based on national administrative data
The number of unplanned emergency readmissions to hospital have often been cited as a marker of quality of hospital care. Indeed, in England, readmissions have been used to influence hospital reimbursements. A number of studies, however, have shown that readmissions are complex and can be linked with a range of factors other than preventable or avoidable harms. If the quality of care at hospital level and individual patient characteristics are not the sole drivers of readmission then the additional factors must lie in the way different health systems manage patients. One way to consider the impact of systemic differences in health systems is to use international comparisons as a form of a natural experiment to see if patterns of readmission are similar or different. Though such comparisons cannot definitely identify the reasons behind differences, they can prompt useful questions on the effects of different health systems.
In this analysis Nuffield Trust want to test whether two different health systems demonstrate a fundamentally different pattern of hospital readmissions. Within any health system there are variations in readmissions rates between areas - the product of a host of patient and health system level factors influencing decisions and resource use. In order to understand the impacts of the broader health systems then we need to consider the overall distributions of readmissions and standardise – as far as possible – for differences at the patient level attributable to the underlying health problems.
The aim will be to analyse HES data covering admissions to NHS hospitals for selected years and calculate overall readmission rates. In parallel we will calculate the equivalent readmission metrics using the Dutch national data for the same time period. Nuffield Trust will then test for statistically significant differences in readmission rates between the two countries, and quantify to what extent any differences can be explained by patient-level factors (e.g. age, deprivation, severity) and the extent to which any variation could be explained by differences in the two health systems. Nuffield Trust will also attempt to distinguish between potentially preventable readmissions and other reasons for readmissions, using the administrative data, and produce a comparison between the two systems.
Expected Benefits:
Over the past five years The Nuffield Trust’s research studies, using NHS data, have been widely used to inform decision making and debate in health care. The Nuffield Trust publishes their reports on the Nuffield website and in peer reviewed journals where appropriate.
The Nuffield Trust list below recent reports of studies where they have made use of HES data;
There are many examples of The Nuffield Trust’s work being cited in parliamentary debates and select committees as well as used by national bodies including the Department of Health and NHS England, CQC and Monitor. Many of the projects have been funded by the Department of Health and NHS, and The Nuffield Trust work in partnership with NHS and other care organisations and with universities. The Nuffield Trust has also provided examples of their studies for NHS Digital to use as evidence to the health select committee.
The benefits of The Nuffield Trust’s work are seen in terms of decisions made by healthcare commissioners and providers, when thinking about the types of services needed to deliver benefits to patients, as well as by policy makers.
The following provides benefits for each of the projects;
1. Evaluations of the impact of innovations in health and social care on hospital utilisation.
The study of Integrated Care Models will inform health care providers, commissioners and policymakers of the impacts of new forms of integrated care emerging under the banner of national ‘Pioneer projects’. This is a piece of applied research funded by DH and with a very wide audience. Throughout the study, the Nuffield Trust will be engaging with the Pioneer sites themselves and with others interested in developing new models of care. This aligns with national policy goals to provide a better care experiences through integration of services.
Over the past few years a range of new forms of GP organisations have emerged. These are seen as one solution to systemic problems facing primary care; however there is little empirical analysis of these new organisational forms. The Nuffield Trust’s study of new models of primary care will be looking at the impact of networks of practices in terms of the way they have changed patient care and service delivery. Such analysis will be critical to future NHS planning on how to organise primary care services. The results will be of key interest all those involved in general practice, primary care and the commissioning of out of hospital services.
UPDATE OCT 2016: As part of realising the expected benefits the Nuffield Trust has presented preliminary results to members of the New Models of Primary Care Network at quarterly meetings.
Improving access to primary has been a matter of concern at the highest levels of government. In 2013 the PM created a Challenge Fund to look at new models of care. As evaluation partners of Barking, Havering and Redbridge’s successful bid to adapt services in the local area, The Nuffield Trust’s work will give provide a judgement about how successful these schemes might be. This will directly impact on local commissioners, and have implications across the country.
2. Research studies involving the surveillance of patterns in hospital admission and costs at area level in England, aimed at identifying areas where innovation in service delivery is taking place.
In all such studies The Nuffield Trust are seeking to improve the NHS’s ability to identify and implement good practice in terms of efficient and effective health care for patients. The Nuffield Trust’s work on serious avoidable harms has the possibility of contributing to safer care and better methods for future monitoring systems.
Ambulatory emergency care (AEC) provides a model of care for patients who have urgent care needs, but do not necessarily warrant an acute hospital admission. Though a number of local evaluative studies have been undertaken there are no systematic analyses across a range of organisations providing AEC. Through analysing the impacts of these schemes we can identify which types are most successful in delivering better care for patients. These can serve as models of success for areas wishing to develop their own services.
UPDATE OCT 2016: As part of realising the expected benefits the Nuffield Trust has presented findings at British Association of Ambulatory Emergency Care Annual National Conference 2015. This project is now closed andno longer requires processing data for this use (apart from auditing purposes).
The Nuffield Trust’s study of alcohol aims to understand the burden on hospital services and to identify areas where preventative action is working well. This work will consider effectiveness of different models of service provision which will meet a specific recommendation for future work made by Public Health England following their survey of hospital alcohol teams. The findings will be of interest to Health and Wellbeing Boards and to local commissioners of alcohol services and aims to share learning of how the burden of alcohol to hospitals can be reduced.
UPDATE OCT 2016: As part of realising the expected benefits the Nuffield Trust has –
(1) Produced a paper "Alcohol-specific activity in hospitals in England" published on 22nd Dec 2015, along with blog "The sobering burden of alcohol on the NHS".
(2) Submitted an academic paper to the BMC Public Health "The impact of alcohol care teams on emergency secondary care use following a diagnosis of alcoholic liver disease - a national difference-in-difference study." on 12/1/2016 .
(3) Public Health England Conference abstract poster presentation "Hospital use before and after first recorded diagnosis of alcohol related liver disease in England: Opportunities for early intervention to reduce harm".
This project is now closed and no longer requires processing data for this use (apart from auditing purposes).
3. Research studies relating to the efficiency of health services and level of competition in the English NHS.
These pieces of work aim to identify good practice in the efficient use of hospital resources. The Nuffield Trust’s future modelling will be used (as their past modelling currently is) to inform public debate about health service provision and central planning assumptions about future needs.
UPDATE OCT 2016: As part of realising the expected benefits the Nuffield Trust has, through the QualityWatch (http://www.qualitywatch.org.uk/) programme, produced a series of reports, carried out several activities and had the following impact. This includes –
1. Hospital admissions from care homes (29th January 2015). Subsequent to publication this was referenced in the evidence for NICE guidance: Transition between inpatient hospital settings and community or care home settings for adults with social care needs (November 2015)
2. Mental ill health and hospital use (14th October 2015). Nuffield Trust has presented the findings at the Public Health England Conference (September 2015) and at the International Conference of Integrated care (May 2016).
Nuffield Trust has also had several contacts with local healthcare providers for guidance on how to apply the methods to carry out the same analysis locally.
Whilst it is hard to draw causality, Nuffield have also been made aware of NHS England undertaking work to drive improvements in the quality of physical health care provided by mental health providers to service users with severe and enduring mental ill health and will be developing a national clinical audit to underpin this under the National Mental Health CQUIN scheme for 2016/17.
4. Linkage of HES data to linked datasets provided by HSCIC
Individual benefits will be covered within separate applications
5. Linkage of HES data to HES IDs provided by HSCIC regarding a specific cohort
Individual benefits will be covered within separate applications
6. Informing the public debate about hospital use
The Nuffield Trust’s responsive analyses will improve the quality of public debate on hospital use by broadening the available evidence base, focusing the debate on evidence rather than assertion and potentially preventing poor policy decisions. This work is widely reported in the media and Nuffield regularly meet with senior policy-makers and leaders in the NHS to discuss thiswork.
7. Evaluation of Virtual Wards in Devon
The evaluation of Virtual Wards fits within a suite of work the Nuffield are undertaking on community based alternatives to hospital care. An earlier study of ours (funded by NIHR) included a very early assessment of Devon’s virtual wards [1], but the number of people recruited was too small to make any robust assessment of whether the scheme had reduced future unplanned admissions. In the following years 6,000 primarily older people have been provided with care in a home based virtual ward. This cohort size should give us the power to detect significant differences, even where these are relatively small. The overall aim is to provide evidence to the health service on methods of care which help people to stay independent of hospital for longer.
[1] Lewis GH, Georghiou T, Steventon A, Vaithianathan R, Chitnis X, Billings J, et al. Analysis of virtual wards: a multidisciplinary form of case management that integrates social and health care. Final report. NIHR Service Delivery and Organisation Programme; 2013.
UPDATE OCT 2016: This project is now closed and no longer requires processing data for this use (apart from auditing purposes)
8. Evaluating the implementation of Quality Standards in the London region
This work aims to assess the extent of the patient benefits delivered by the introduction of new quality standards and to evaluate a new set of outcome indicators that can be used to more accurately measure their benefits. Applying these standards has a potential direct impact on the quality of over a million care episodes a year – over 500,000 patients. Moreover the London standards will be incorporated into the national Keogh standards. As a consequence this work on standards and outcomes will be of relevance to every hospital in the NHS with prospects of being incorporated into national audit tools. Nuffield will be presenting the outcomes in peer-reviewed reports and using Nuffield's extensive network of contacts to target these towards key decision makers. This will be facilitated by the Trust’s communications team who are very experienced with this type of activity. There is also direct interest from NHS London who have expressed an interest in funding further pieces of work in this area.
UPDATED ADDITIONAL PROJECTS OCT 2016 – new projects the Nuffield Trust are requesting access to HES data for.
9. Research studies identifying and evaluating models of medical generalism
Three separate panels of experts, the Independent Commission for the Royal College of General Practitioners and the Health Foundation, The Royal College of Physicians of London’s (RCPL) Future Hospital Commission (FHC) and the General Medical Council’s Shape of Training review, have all recommended a revival in general medicine to better provide high-quality, cost-effective care. However, general medicine cannot be rapidly reintroduced, nor hospitals, let alone smaller ones, reconfigure services unless there is a clear understanding of patient need and how different models of current medical care meet these.
With NHS England’s Viable Smaller Hospitals workstream of the New Models of Care programme already underway, there is an urgent need for clear and comprehensive evidence to guide future policy and service reconfiguration.
This study has the potential to have a major impact at the national and international levels, as the debate so far around medical generalism has operated largely at an abstract level. This research will provide much needed evidence to ground the debate in the empirical and experiential realities of underlying patient need. It will provide a theoretically informed evidence base from which to take the debate forward. This will not only have relevance for unscheduled adult medical care, but could also be applied to other clinical areas, such as surgery and paediatrics. It also has relevance to larger hospitals, as well as informing much broader, international debates around matching medical workforce to growing patient need.
This research should influence decision making around:
• Ways of working in hospitals
• The education of doctors at undergraduate and graduate level
• The number and types of doctors required in the UK
• Continuing professional development for physicians
• Legislative and contractual arrangements for doctors
• The future of smaller hospitals and their role in the wider healthcare system
10. Classifying readmissions and comparing readmission rates between the Netherlands and the UK based on national administrative data
Despite the prominence of readmission rates in discourse around health service organisation, there are few empirical studies that compare the rates of readmission across different health systems.
This analysis will provide a thorough comparison between readmission rates in England and the Netherlands, and also allow a deeper understanding of which readmissions are truly preventable and those that occur for other reasons. Readmissions due to complications are a burden for patients and account for high healthcare costs: this research will provide insight into the types of readmissions that should really be included in hospital-level indicators to get a valid representation of quality improvement potential.
By way of further evidence as to the use made of HES, a non-exhaustive list of recent publication using HES data is provided below. All such articles are in the public domain, and many relate directly to current health practice or topics of interest, and have been commissioned by the NHS or the Department of Health.
Nuffield Trust Research Group - Recent publications that have used HES (October 2014)
• Holly Dorning and Martin Bardsley. Focus On Allied Health Professionals. Nuffield Trust September 2014.
• Theo Georghiou and Martin Bardsley. Exploring the costs of end of life care. Nuffield Trust September 2014.
• Ian Blunt, Martin Bardsley & Giovanni FM Strippoli. Predialysis hospital use and late referrals in incident dialysis patients in England: a retrospective cohort study. Nephrology Dialysis Transplantation. Nephrol. Dial. Transplant. (2014) doi: 10.1093/ndt/gfu284
• Steventon A, Bardsley M, Doll H, Tuckey E, Newman S. Effect of telehealth on glycaemic control: analysis of patients with type 2 diabetes in the Whole Systems Demonstrator cluster randomised trial. Submitted for publication. BMC Health Services Research. June 2014
• Steventon A, Bardsley M and Mays N. Effect of a telephonic alert system (Healthy Outlook) for patients with chronic obstructive pulmonary disease: cohort study with matched controls. Journal of Public Health Advance Access published July 10, 2014. pp. 1–9 doi:10.1093/pubmed/fdu042
• Blunt I, Bardsley M, Grove A, et al. Classifying emergency 30-day readmissions in England using routine hospital data 2004–2010: what is the scope for reduction? Emerg Med J Published Online First 26/3/14 doi:10.1136/emermed-2013-202531
• Lewis, G. H., Vaithianathan, R., Wright, L., Brice, M. R., Lovell, P., Rankin, S., & Bardsley, M. (2013, November 4). Integrating care for high-risk patients in England using the virtual ward model: lessons in the process of care integration from three case sites. International Journal of Integrated Care. Retrieved from http://www.ijic.org/index.php/ijic/article/view/URN%3ANBN%3ANL%3AUI%3A10-1-114754/2197
• Lewis GH, Georghiou T, Steventon A, Vaithianathan R, Chitnis X, Billings J, et al. Analysis of virtual wards: a multidisciplinary form of case management that integrates social and health care. Final report. NIHR Service Delivery and Organisation Programme; 2013.
• Steventon A, Tunkel S, Blunt I and Bardsley M. Effect of telephone health coaching (Birmingham OwnHealth) on hospital use and associated costs: cohort study with matched controls. BMJ. 2013 Aug 6;347:f4585. doi: 10.1136/bmj.f4585.
• Bardsley M, Doll H and Steventon A. Impact of telehealth on general practice contacts: findings from the whole systems demonstrator cluster randomised trial BMC Health Services Research 2013, 13:395 doi:10.1186/1472-6963-13-395
• Roberts A, Blunt I, Bardsley M. Focus On: Distance from home for emergency care. QualityWatch Report May 2014. Nuffield Trust/Health Foundation
• Georghiou T, Cooke M, & Bardsley M. How Representative Are Patients Who Access the Marie Curie Nursing Service of the Population of People Who Die Each Year in England? BMJ Supportive & Palliative Care, 3(1), 134–134. doi:10.1136/bmjspcare-2013-000453b.27
• Natasha Curry, Matthew Harris, Laura Gunn, Yannis Pappas, Ian Blunt, Michael Soljak, Nikolaos Mastellos, Holly Holder, Judith Smith, Azeem Majeed, Agnieszka Ignatowicz, Felix Greaves, Athina Belsi, Nicola Costin-Davis, Jessica D Jones Nielsen, Geva Greenfield, Elizabeth Cecil, Susan Patterson, Josip Car, Martin Bardsley Integrated care pilot in north west London: a mixed methods evaluation. Int J Integr Care 2013; Jul–Sep, URN:NBN:NL:UI:10-1-114735
• Chitnis, X. , Georghiou, T., Steventon, A., & Bardsley, M. J. (2013). Effect of a home-based end-of-life nursing service on hospital use at the end of life and place of death: a study using administrative data and matched controls. BMJ Supportive & Palliative Care, 1–9. doi:10.1136/bmjspcare-2012-000424
• Bardsley M, Blunt I, Davies S, Dixon J. Is secondary preventive care improving? Observational study of 10 year trends in emergency admissions for conditions amenable to ambulatory care. BMJ Open 2013; :e002007. doi:10.1136/bmjopen-2012-002007
• Davies A, Chitnis X, Bardsley M. Hospital activity and cost incurred due to unregistered patients in England: considerations for current and new commissioners. J Public Health first published online December 19, 2012 doi:10.1093/pubmed/fds098
• Clarke A, Blunt I, Bardsley M. Analysis of emergency 30 day readmissions in England using routine hospital data 2004-20010.Is there scope for reduction. Presented the Society for Social Medicine Annual Scientific Meeting. Journal of Epidemiology and Community Health. September 2012 Supplement. Doi:10.1136/jech-2012-201753.117
• Billings J, Blunt I, Steventon A, Georghiou T, Lewis G, Bardsley M. Development of a predictive model to identify inpatients at risk of readmission within 30 days of discharge (PARR-30). BMJ Open. 2012;00:e001667. doi:10.1136/bmjopen-2012-001667.
• Roland M, Lewis R, Steventon A, Adams J, Bardsley M, Brereton L, Chitnis X, Staetsky L, Tunkel S, Ling T. Case management for at-risk elderly patients in the English Integrated Care Pilots: observational study of staff and patient experience and secondary care utilisation. International Journal of Integrated Care – Volume 12, 24 July – URN:NBN:NL:UI:10-1-113731 / ijic2012-130 – http://www.ijic.org/
• Steventon A, Bardsley M, Billings J, Dixon J, Doll H, Hirani S, Cartwright M, Rixon L, Knapp M, Henderson C, Rogers A, Fitzpatrick R, Hendy J, Newman S. Effect of telehealth on use of secondary care and mortality: findings from the Whole System Demonstrator cluster randomised trial. BMJ 2012;344:e3874.
Outputs:
Anticipated dates of study reports are listed. All may also include presentational web material (for example slideshows and blog posts), in addition to presentations given in person at relevant research or policy conferences, etc.
1. Evaluations of the impact of innovations in health and social care on hospital utilisation
• - Integrated Care Models (Pioneers).Interim report in 2016, with annual reports from 2016 to 2020 (final report in 2020).
- New models of primary care
• Interim report, September 2015. Final Nuffield Trust research reports will be available Autumn 2016. Update April 2016: Nuffield Trust publication due in June 2016 and planning a subsequent separate academic research paper
- PM’s challenge fund in Barking, Havering and Redbridge
• Interim report to local areas, June 2015. Final Nuffield Trust research report, peer review articles - summer 2016.
2. Research studies involving the surveillance of patterns in hospital admission and costs at area level in England, aimed at identifying areas where innovation in service delivery is taking place.
- Avoidable harm project
• Reports co published with LSHTM. Final report to NIHR available January 2017. Also peer review articles at this time.
- Ambulatory emergency care project
• Nuffield Trust preliminary report (evaluation of pilot sites) – spring 2015 and if successful we will agree a more comprehensive longer term evaluation proposal. UPDATED OCT 2016: This project is now closed andno longer require processing data for this use (apart from auditing purposes).
- Assessment of the burden of alcohol on hospital services
• Nuffield Trust report completed by summer 2015, with peer reviewed papers to be submitted also in summer 2015. UPDATED OCT 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes).
3. Research studies relating to the efficiency of health services and level of competition in the English NHS.
- Descriptions of differential patterns of hospital use by area and provider.
• Analysis of length of stay led to workshop in September 2014 (with Monitor), research report planned for winter 2014. Update May 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes).
Child health study, to report 2016/17.
4. Linkage of HES data to linked datasets provided by HSCIC
Individual outputs will be covered within separate applications
5. Linkage of HES data to HES ids provided by HSCIC regarding a specific cohort
Individual outputs will be covered within separate applications
6. Informing the public debate about hospital use
The outputs of this work will be in the form of blogs, briefings, and/or presentation slideshows, posted on the Nuffield Trust website and made freely available to all. Due the responsive nature of the work, The Nuffield Trust are not able to provide prospective dates for these outputs
7. Evaluation of Virtual Wards in Devon
Nuffield trust report to be published by end of 2015. UPDATE OCT 2016: This project is now closed and no longer requires processing data for this use (apart from auditing purposes).
8. Evaluating the implementation of Quality Standards in the London region
• Nuffield Trust report to be published by mid-2016
The report will require quantitative analysis, the methods for which will be piloted in a Masters dissertation to be completed by the end of 2015. This work, which is overseen by a senior analyst, will lead to a peer reviewed publication to be submitted also in early 2016. The Nuffield Trust network will also be used to promote the findings amongst senior decision makers in the NHS and the Department of Health.
UPDATED ADDITIONAL PROJECTS OCT 2016 – new projects the Nuffield Trust are requesting access to HES data for.
9. Research studies identifying and evaluating models of medical generalism
Outputs in late 2017 will include a final report, an executive summary, and summary results for a lay audience. All will be made publically available on the Nuffield Trust website. Other planned mechanisms for dissemination include: the packaging and provision of on-going feedback to participating hospitals; workshops with user groups; face to face engagement with policy makers at national level; explicit knowledge transfer and exchange initiatives, such as working with networks such as the NHS Confederation. All data published/disseminated will be aggregated and no small numbers are anticipated but if they arise then they will be suppressed in line with HES analysis guidelines.
At the same time abstracts will be submitted to key conferences, such as Future Hospital Programme of the RCPL, Quality and Safety in Health Care Forum, the NHS Confederation Conference, as well as NIHR events.
10. Classifying readmissions and comparing readmission rates between the Netherlands and the UK based on national administrative data
Summary report published on Nuffield Trust website in winter 2016 and with an aim to publish in a reputable, peer reviewed journal by early 2017. The Nuffield Trust network will also be used to promote the findings amongst senior decision makers in the NHS and the Department of Health.
All data published will be aggregated and no small numbers are anticipated but if they arise then they will be suppressed in line with HES analysis guidelines.
Processing:
The data requested and already disseminated will be accessed and processed by substantive employees of The Nuffield Trust and only for the purposes described in the application.
Whilst the nature of detailed analysis in relation to each project varies, the broad context of processing is consistent. In summary :-
- The data is downloaded from NHS Digital and imported into SAS. The server is held on-site, and access is restricted to named individuals according to The Nuffield Trust’s security policy.
- The data is held within separate folders within the server.
- Remote access to the database is permitted, but only through Citrix via secure token (so processing is still carried out on site), and with local printing and downloading disabled.
- Only staff who have signed a confidentiality agreement and have received IG training are permitted access.
- All access to individual files is recorded, and a sample audited to investigate the existence of any adverse incidents, and ensure that appropriate access has been maintained.
- Once held in SAS, the researcher will view the data and select a specific cohort for each individual study. Commonly a process will initially take place to define the particular cohort of interest in terms of e.g. individual diagnostic codes or procedure codes. The researchers will use routinely available filter definitions where possible, but may amend these based on the nature of each study’s group of interest. Depending on the research a similar control group may be established.
- The individual researcher then analyses the data, before applying the relevant disclosure controls to any output. Software used will be SAS, R and stata; typically this will involve analysis on several outcome measures, risk adjustment and the construction of control groups.
- No record level data would be linked to this dataset, but it may be combined with publically available demographic or geographic data, for example in relation to local Trust performance
- Outputs are thus produced which consist of aggregate data (or indicator/statistical data) only.
As an example, for the assessment of the burden of alcohol on hospital services, The Nuffield Trust will look at national trends of alcohol related A&E attendances and inpatient admissions for alcohol related liver disease (ARLD) over the most recent decade. The Nuffield Trust will also identify a cohort of patients diagnosed with ARLD for the first time, and examine their prior and post diagnosis patterns of hospital use, in the context of a comparator group. Analyses will be undertaken at local authority level and will take into account provision of acute trust alcohol services.
In all such work, The Nuffield Trust analyse patterns of hospital activity by area, by year, by condition or by provider, developing comparative analyses and standardising for a range of episode level, or patient level variables – such as age, the presence of a long terms condition, prior patterns of use. The analyses commonly follow the health and care of a well-defined cohort of individuals over a lengthy period of time (for example the alcohol study will follow for ten years, the child health study – part of the differential patterns of health – will evaluate a cohort throughout childhood). Such analyses require complex processing for fair comparisons and to capture activity for whole populations – something that only nationally collated data can provide.
The datasets necessary for each of the studies are listed below. Where the start date is given as being earlier, OP data will be used from 2003/04 and AE data from 2007/08. *Study will require further years of data beyond those being requested in this application. :
- Integrated Care Models (Pioneers).
• APC, OP, AE 2004/05 to 2019/20*
- New models of primary care
• APC, OP, AE 2003/04 to 2015/16
- PM’s challenge fund in Barking, Havering and Redbridge
• APC, OP, AE 2004/05 to 2015/16
- Avoidable harms project
• APC, OP, AE 2003/04 to 2016/17*
- Ambulatory emergency care project. (Update May 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes)).
• APC, OP, AE 2001/02 to 2015/16
- Assessment of the burden of alcohol on hospital services (Update May 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes)).
• APC, OP, AE 2001/02 to 2013/14
- Descriptions of differential patterns of hospital use by area and provider.
• APC, OP, AE 1997/98 to 2015/16
For the study of Virtual Wards in Devon, the Nuffield Trust will use HES data from a small set of areas chosen as being similar to Devon (these areas are Somerset, Cornwall, Shropshire and Herefordshire). From these areas, the researchers will select a pseudo control group of individuals who shared characteristics with individuals who were admitted to the Virtual Ward scheme in Devon. These characteristics include age, sex, prior use of hospital services, and diagnostic history. The characteristics and hospital utilisation of the individuals admitted to Virtual Wards will be derived using a locally sourced pseudonymised data set (SUS). We will then compare future unplanned and other admissions to test for differences between the Devon Virtual Wards cohort and the pseudo control group.
For the evaluation of the implementation of Quality Standards in the London region The Nuffield Trust will look at variation in outcomes by London hospital/trust by carrying out cross section analysis at different time points, analysing the changes in extent of variation over time, investigating variations in trends and looking at these in different patient groups.
The datasets necessary for the new study is listed below. Where the start date is given as being earlier, OP data will be used from 2003/04 and AE data from 2007/08.
- Evaluation of Virtual Wards in Devon. (UPDATED OCT 2016: This project is now closed and no longer require processing data for this use (apart from auditing purposes).
• APC, OP, AE 2006/07 to 2014/15
- Evaluating the implementation of Quality Standards in the London region
• APC, OP, AE 2005/06 to 2015/16
UPDATED ADDITIONAL PROJECT information OCT 2016 – new projects the Nuffield Trust are requesting access to HES data for.
- Research studies identifying and evaluating models of medical generalism
• APC, OP, AE 2010/11 to 2015/16
- Classifying readmissions and comparing readmission rates between the Netherlands and the UK based on national administrative data
• APC 2013/14 to 2015/16
Additional note – third parties
The Nuffield Trust will not provide access to for any third parties to access record level data, even where these third parties are study partners. The use of this data will be limited to Nuffield Trust for the purpose outlined above only. Data published or provided to third parties will be limited to aggregated data, at area, organisational or cohort-level all subject to small number suppression in line with the HES Analysis Guide.