NHS Digital Data Release Register - reformatted

University Hospitals Birmingham NHS Foundation Trust

Project 1 — DARS-NIC-06605-X1L9Z

Opt outs honoured: Yes - patient objections upheld (Section 251)

Sensitive: Sensitive, and Non Sensitive

When: 2016/04 (or before) — 2019/04.

Repeats: Ongoing, One-Off

Legal basis: Health and Social Care Act 2012, Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012), Section 251 approval is in place for the flow of identifiable data, National Health Service Act 2006 - s251 - 'Control of patient information'. , Health and Social Care Act 2012 - s261 - 'Other dissemination of information', Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant, Identifiable

Datasets:

  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Critical Care
  • Hospital Episode Statistics Outpatients
  • Office for National Statistics Mortality Data (linkable to HES)
  • Office for National Statistics Mortality Data
  • Bridge file: Hospital Episode Statistics to Mortality Data from the Office of National Statistics
  • Civil Registration - Deaths
  • Civil Registration (Deaths) - Secondary Care Cut
  • HES:Civil Registration (Deaths) bridge

Yielded Benefits:

As above

Objectives:

The objective is to provide quality and benchmarking analysis that will enable NHS organisations to deliver better services for patients. Such analysis is solely provided either: via the online Healthcare Evaluation Data (HED) tool, or via bespoke reports. This work is commissioned and funded on an ongoing basis by University Hospitals Birmingham NHS FT (UHB) and produced by the Health Informatics Department within the Hospital. The sole objective of this work it is to support both UHB and other NHS Trusts and commissioners in the ongoing monitoring of clinical quality and organisational effectiveness. This purpose is fulfilled either: a) directly, i.e. the NHS Trust holds a subscription to use the HED system, or b) indirectly, i.e. analytics are provided via a non-NHS organization, Pricewaterhouse Coopers (PwC) who hold a subscription to use aggregate small number suppressed data within the system. The customer has reviewed the NHS standard (ISB 1523) relating to anonymisation and can confirm the system is compliant with this. This has also been corroborated by a recent audit from the HSCIC particularly in relation to small numbers suppression. The vast majority of subscriber organisations are NHS Organisations, there is only one non-NHS organization, PwC. This organisation works within the healthcare space and have access to the system solely for the purpose of assisting NHS organisations. UHB currently has approximately 60 clients who subscribe to use the HED tool, with the majority of those being NHS Hospitals (approximately 50 NHS Hospitals). The geographical range of these organisations spread across England, and are not concentrated in one region. The current types of organisations holding a subscription to use the HED tool are limited to: NHS Organisations (figures in brackets indicate current count of organisations holding a subscription) • NHS Hospitals (51 hospitals) • Clinical Commissioning Groups (CCG) (1 CCG) • Commissioning Support Units (CSU) (2 CSU’s) • the Trust Development Authority (TDA) • NHS England • Allied Health Sciences Networks (AHSN) (2 AHSN’s) • Quality Observatories (QO) (2 QO’s) Non-NHS Organisation - (PwC) • Private sector healthcare consultancy providers (PwC Healthcare) Data is required for all England, for multiple reasons. Primarily, because when performing analyses, organisations need to be able to select peers based on casemix for more accurate benchmarking to assist with service improvement and these organisations may not be local or regional based. This is true for both UHB and customers of the UHB HED analytical tool. As an example, some HED customers are regional providers of a specific service and others are specialised hospitals which require benchmarking across the whole of the UK. Secondly the current client base for the HED tool is spread across multiple regions of England and therefore require access to their own data. The years of data required allow for organisations to perform multiple functions, such as being able to demonstrate service improvement over time and visualize trends. PLEASE NOTE: The level of data that can be viewed within the system depends on the access level of the named individual user and which organisation they are working for. A full explanation of this including summary table is in the next section on ‘processing activities’. As previously mentioned, PwC users are UNABLE to access any information within the system that has been produced using ONS data. PwC users are ONLY able to access aggregate level small number suppressed information. To deliver the stated objective a wide range of healthcare indicators are calculated (over 100) and as such various HES data sets including APC, OP, A&E as well as linked ONS data are required. The objective in having as wide an array of relevant indicators as possible is to give NHS managers and clinicians as complete a picture of hospital performance as possible. Therefore the whole dataset is needed and cannot be compressed to certain fields. HES-ONS linked data specifically will be used within this work to look at outcomes analysis and form analytical overviews relating to post discharge mortality. Such overviews relate to standardised post discharge mortality monitoring within distinct clinical cohorts and bespoke long term survival monitoring. This work will increase the understanding of complete pathways of care. Any analysis produced using ONS data will not be made available to non-NHS organisations. Local patient identifier is required within the HED system for direct patient care. HED delivers a national benchmarking system that can provide assurance to hospitals they are providing safe and high quality care and treatment, or signpost areas of concern. The HED system enables trusts to easily identify particular patient cohorts that are statistical outliers and warrant further examination. Local patient identifiers are an essential requirement linking areas that require investigation, to hospital records. Without them trusts would not be able to identify their patients and conduct root cause analyses both for internal governance and also to provide assurance to external regulatory authorities across a range of key indicators ie. HSMR, SHMI. Equally, the Secretary of State for Health has ordered a review of avoidable deaths. Ensuring trusts have access to their local patient identifiers through HED enables them to conduct these audits and therefore focuses attention on eradicating mortalities that could have been prevented. It is essential for root cause analysis that patients can be considered on a case by case basis. The ability to be able to identify patients via HED and then subsequently interact with other datasets and clinical notes held locally is vital to detect required clinical quality improvements. A specific example of this is via Mortality reviews, where HED directly enables organisations to monitor and manage services so that no avoidable harm comes to patients whilst in their care. HED specifically empowers healthcare managers and clinicians to measure patient experience and outcomes benchmarked against their peers (both local and nationally) eg. Length of stay, Mortality, Readmissions. This information is not available locally and delivers clinically relevant outcome data and comparative information to clinicians. Access to local patient identifiers is critical to enable health care professionals to audit their data and clinical practice. This review of individual patient outcomes and experience can evidence the care provided is of a good quality and safe, and also provide assurance to trust boards. In addition access to identifiers will also enable clinicians to review and audit deaths attributed to them in national mortality models. Patient information is only available to organisations who deliver the care. A protocol including Caldicott authorisation form has been approved previously by DAAG (DAAG reference: 240412-a) for controlling access to such sensitive items. This established process ensures that access to sensitive items is restricted to authorised hospital trust staff and was found to be robust during a recent HSCIC Audit. The rationale for allowing PwC access to aggregate level small number suppressed analytics: As some NHS organisations require additional specialist resource to deliver the benefits of using benchmarking information, therefore subscription to the HED tool is required by PwC as: 1. This enables them to have people equipped to provide immediate support to NHS organisations. 2. Providing them with aggregate level information via the tool is the most efficient way of disseminating information in support of this work – the alternative described directly below would clearly create large inefficiencies. 3. It allows such organisations to be autonomous in undertaking work that requires a level of independence and is beneficial to the NHS e.g. the Keogh review. In this instance PwC were commissioned to complete this review independently of any engagement of NHS Trusts involved. It would therefore have been inappropriate for them to ask the Hospitals for the information required to undertake this review. The alternative would be for NHS organisations working with the non-NHS organisations to provide data directly to the non-NHS organisations. This arrangement would have the following detrimental effect on the NHS: 1. It would actively be encouraging NHS-organisations to export data at varying levels from the HED system and send it to non-NHS organisations. By non-NHS organisations having direct access UHB are able to monitor which modules are accessed when and by whom. This negates the need for NHS organisations to export isolated aggregate data and email it outside the NHS. 2. It would introduce a longer lead time for projects which would ultimately cost the NHS more.

Expected Benefits:

To continue to drive clinical service improvements and benefit patient outcome as demonstrated below. How the data has already benefited health and social care The data is used to provide benchmarking information on areas such as: • Mortality rate • Emergency readmission rate • Length of stay • Day case rate • New to follow-up outpatient ratios • A&E clinical quality indicators The output of analytics available to NHS organisations using the HED system enable NHS clinicians and managers to increase the understanding of patient outcomes and identify areas for improvement and best practice. A range of direct benefits to healthcare have already been delivered during the course of this project. In summary: • NHS Organisations are provided with the information necessary to provide clinical quality and patient safety assurance within their organization • NHS Organisations are able to identify & interrogate areas of poor performance allowing for evidence based health service management • NHS Organisations are able to identify areas of good performance increasing the understanding of best practice in healthcare • Clinicians are supported in undertaking appraisal and revalidation – reflective practice is a vital contributor to ensure high quality care By utilising the outputs and analytics provided, organisations are able to focus and deliver on the three key principles of Health and Social Care: • Patients at the centre of the NHS – the analytics as stated above ensure that organisations are empowered to identify areas of poor performance and can put in place measures to rectify this. They are also then able to demonstrate improvement in these areas over time. As the numerous measures bring together patient safety and operational efficiency, organisations can easily identify areas to target to ensure that the care being given is safe, effective and optimal. • Changing the emphasis of measurement to clinical outcomes – there are multiple modules provided to assist with this focus on clinical outcomes, and the strive to achieve best practice. Organisations are able to ensure they are performing as expected against local and national standards and where necessary identify areas of best practice through benchmarking with peers (locally and nationally). • Empowering health professionals – The tool enables managers and clinicians to make evidence based decisions i.e. supporting business cases, changing patient pathways. HED provides easily accessible dashboards and analytical modules so healthcare professionals are able to review their specialty and service lines to ensure service delivery and patient outcomes are optimal. The system reports information in a timely, meaningful and relevant fashion to various clinical settings. As the analytics are used by providers and commissioners, the GP is empowered to ensure the services provided are delivery best patient care, again keeping the patient at the centre. Equally the analytics are also used by NHS England and NHS TDA to assist with wider reviews of patient care and outcomes, when reviewing governance and areas of accountability. To give a specific example: Each month a range of modules are produced which allow NHS hospitals to identify areas of potential concern relating to mortality within their organisation. Such areas are then investigated further. When appropriate & authorised, the ability to identify a cohort of patients within the organisations and undertake appropriate clinical case note review is invaluable as a part of ensuring good hospital governance. This process is used by hospitals up and down the country, most commonly in the areas of mortality and readmissions management. Without using the data sets being requested it would be impossible to deliver this benefit to the NHS. This would have a significant impact on a sizeable number of NHS Hospitals across the country. The role of Non-NHS Organisations in supporting NHS Organisations: Allowing select private sector healthcare organisations to access aggregate level analytics is beneficial to the NHS as it enable the NHS to quickly access additional specialist resource when it is required. This allows the timely delivery of improvements in clinical quality and/or operational efficiency. Without this option it would be necessary for them to increase or upskill their internal resource. To do so would require longer timescales and prove more costly for the organisation in the long run if there is primarily a short term need. Some further specific benefits relating to private sector access include: 1. Supporting the Keogh review at various levels in terms of creating the initial data packs for the review and also in undertaking subsequent mortality reviews which ultimately resulted in 13 hospitals being taken off special measures by the CQC. 2. Supporting commissioners across an area to have the evidence necessary to understand how to improve the quality and provision of care across a region. It is not appropriate to set a target date for this work as the work streams are ongoing and the outputs already form part of a significant number of NHS organisations’ monthly reporting and governance assurance processes.

Outputs:

The sole outputs are benchmarked or standardised healthcare indicators such as measures of mortality, survival, discharge and admission trends, readmissions, length of stay, patient safety etc. Such outputs are solely provided either via: • the range of Dashboards and Modules made available within the HED system, or • aggregate small number censored reports Within the HED system: Dashboards will only contain aggregate level information. Modules can contain aggregate level information and low level information. As explained, the level of data that can be viewed within a module depends on the access level of the named individual user and which organisation they are working for. As such, access to low level information, including small numbers, is strictly controlled in line with the access controls outlined in the above section on ‘Processing activities’. Outputs are to be used solely for the purpose of assisting the NHS. Outputs will be used by NHS Clinicians and Managers to: • Assure and manage clinical quality and patient safety within NHS Organisations • Identify trends requiring a clinical review of patient pathways. (Hospital based users with Caldicott approval are able to investigate nationally standardised metrics and ‘drill-down’ to patient level information, including local patient identifiers, in order to conduct clinical case note review and route cause analysis) • Increase the understanding of patient outcomes • Identify potential areas for improvement in clinical quality or operational efficiency either within a Hospital or a local healthcare economy • Identify areas of best practice either within hospital trusts or local healthcare economies • Provide consultants with the information necessary for consultant revalidation All of the above will serve to increase the understanding of patient outcomes in regard to quality, safety, productivity and efficiency benchmarking within the NHS. As mentioned, aggregate level small number censored analytics produced for the HED tool are being made available to one private sector healthcare organization, PwC, who UHB are working with in supporting NHS organisations. Some examples of the specific outcomes of this access are: • Aggregate level analytics have been used to undertake due diligence for both Monitor and CQC. A good example being production of the Keogh review information packs. This information was vital to the extensive work undertaken as part of the Keogh review which has culminated in the majority of the hospitals originally identified being taken out of special measures by the CQC. • A further example is use of aggregate level analytics on elderly care readmissions with a CCG in order to support work helping them to understand how they could reduce avoidable readmissions within their region. It is not appropriate to set a target date for this work as the work streams are ongoing and the outputs already form part of various NHS organisations’ monthly reporting and governance assurance processes.

Processing:

Data received from HSCIC is only processed by authorised UHB staff on site at UHB. No third parties are involved in the processing of the data. Data received from the HSCIC by UHB is processed in line with a strict protocol and is stored in an access restricted server. This process was audited by the HSCIC and found to be robust. The data received is used to create a wide range of healthcare indicators which focus in on the quality, safety, productivity and efficiency of healthcare delivery. Such analysis is solely provided either: via the online Healthcare Evaluation Data (HED) tool, or via bespoke reports. Either of which is only provided to UK organisations. The vast majority of subscriber organisations are NHS Organisations, there is only one non-NHS organization, PwC. This organisation works within the healthcare space and has access to the system solely for the purpose of assisting NHS organisations. Summary of types of users and access controls in place: PwC: Access to aggregate level small number suppressed analytics only formed using HES APC, OP or A&E data (but NOT ONS data) NHS but non-Hospital User: Access to aggregate level small number suppressed analytics only formed using HES APC, OP, A&E and/or ONS linked data. NHS Hospital User: Access to aggregate level small number suppressed analytics only formed using HES APC, OP, A&E or ONS linked data unless Caldicott authorisation is in place to allow access to low level details and/or sensitive items for their own organisation only. No record level HES or ONS data is provided to any organisation, except where an individual working within an NHS Hospital has the authorisation of their Hospital’s Caldicott Guardian to access patient level information, including sensitive items, for the purposes of conducting clinical review of cases. In such instances a summary (but not all fields present in the raw HES or ONS data) is provided at spell or patient level. For example, the summary will give details of the admission date, method and diagnosis for a patient but not all fields relating to the episodes as recorded in the raw HES data.


Project 2 — DARS-NIC-150435-R7X1Q

Opt outs honoured: No - consent provided by participants of research study (Consent (Reasonable Expectation))

Sensitive: Non Sensitive

When: 2018/10 — 2018/12.

Repeats: One-Off

Legal basis: Health and Social Care Act 2012 – s261(2)(c)

Categories: Identifiable

Datasets:

  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Outpatients
  • HES:Civil Registration (Deaths) bridge
  • Civil Registration (Deaths) - Secondary Care Cut

Objectives:

Stereotactic Ablative Radiotherapy (SABR) is an emerging novel radiation technology. SABR is a specialised radiotherapy treatment planning technique resulting in a high dose to the target with steep dose gradients resulting in rapid dose fall off outside the target area. This results in high biologically effective dose (BED) while minimising the dose received by the normal tissues, and could potentially minimise the radiotherapy treatment toxicity and side effects. The technique requires specialist positioning equipment and/or imaging (stereotaxis) to confirm correct targeting (accuracy) and it can be delivered using either standard linear accelerators or specially designed devices which are dedicated to delivering stereotactic treatments. Using a small number of fractions provides the opportunity for cost savings compared with conventional fractionation or surgical alternatives, and may free up capacity within NHS radiotherapy departments. The current SABR indications for which evidence is rapidly accumulating are: • oligometastatic cancer (3 or fewer sites of metastatic disease) • cancer that has recurred in a site treated previously treated with radiotherapy (re-irradiation) • patients with hepatocellular carcinoma These 3 groups of patients should receive SABR within this Commissioning through Evaluation (CtE) project, which will serve to improve access to SABR within the UK and enable data collection to further expand the current evidence base. It is possible that additional indications will be added to the program in due course, including benign spinal conditions and renal cancer. This study has been commissioned by the National Institute for Health and Care Excellence (NICE) to support NHS England’s Commissioning through Evaluation (CtE) programme. As part of this CtE project the centres delivering SABR treatment will be collecting routine clinical data and data on quality of life, pain symptoms and patient experience using the interim access tool developed by King’s Technology Evaluation Centre (KiTEC - part of King's College London). KiTEC will be undertaking the analysis of this data in order to answer the NHS England evaluation question whether the treatment offers to these patients improved clinical outcomes in combination with less side effects and improved quality of life. The evaluation scheme is being run for three years in a total of fifteen specialised centres in England, although not all centres are offering SABR to all three sets of patients. The first patient was recruited in June of 2015, and it is currently anticipated that patients will be enrolled up until September-2018, with patients being followed up for two years. As of September 2018, the number of patients recruited across all seventeen participating centres is approximately 1,700. This CtE project has HRA ethics approval for the analysis of these patient data already recorded by the NHS Trusts delivering SABR in a pseudonymised format by KiTEC. This is, therefore, a low-risk observational data analysis. The research is non-interventional as it deals with the collation of routine outcome data already collected after patients provide informed consent as part of their clinical management to undergo SABR. Consent to undergo SABR has been undertaken by the individual NHS Trusts. The patients have consented for their data to be analysed by KiTEC. This consent is separate to their treatment consent. This project seeks to identify the impact in secondary care health settings taking into consideration all contacts with hospitals. KiTEC are requesting data from NHS Digital to add to the commissioning through evaluation database that is currently being populated, as patients may see other healthcare professionals outside of the trial, or their participating centre. All of the work will take place within the UK. KiTEC are acting as the sole Data Controller in relation to this study, and have engaged University Hospitals Birmingham (UHB) for the data management element of the study (managing and administering the database), acting under instruction from KiTEC. Additionally, KITEC are responsible for undertaking any analyses, therefore pseudonymised patient-level data will need to be shared between UHB and KiTEC. A report that describes the evidence for the clinical and cost-effectiveness of SABR will be presented to the UK SABR consortium, NHS England, and NICE and will be used to inform future commissioning. Following review by the project's stakeholders, this report will be then submitted for publication in peer review journals. Outputs from the project will contain only data that is aggregated (with small numbers suppressed in line with the HES Analysis Guide). The evaluation should show that there is an improvement in patient outcomes and a reduced burden on the NHS for subsequent treatment of complications and recurrence.

Expected Benefits:

This project is evaluating the effectiveness of Stereotactic Ablative Radiotherapy (SABR), an emerging novel radiation therapy technology in three specific areas outlined. The three areas include: oligometastatic cancer, cancer recurred in a site treated previously with radiotherapy, and patients with hepatocellular carcinoma. SABR is a specialized radiotherapy technique that delivers a high dose of radiation to the tumour while minimising the dose received by normal tissues, potentially minimising radiotherapy treatment toxicity and side effects. This project will look at both the impact on the patients as well as the financial impact to the NHS. This project will determine whether the treatment under investigation has both a positive benefit for patients and the NHS, or whether it has any disadvantages that have not previously been identified. If the findings are positive then this treatment may mean that patients end up undergoing fewer unsuccessful treatments and that the patient experience and survival are improved.

Outputs:

Outputs from the project will contain only data that is aggregated (with small numbers suppressed in line with the HES Analysis Guide). A final report on the analyses will be generated by KiTEC for NHS England and NICE that will answer the questions below: - What is the 1-year and 2-year survival following treatment with SABR for the indications covered by the Commissioning through Evaluation (CtE) scheme (presented as estimates with confidence intervals)? How do these survival estimates compare with the target outcomes (see section 4), in terms of superiority or non-inferiority? - Does treatment with SABR for the clinical indications covered within the CtE scheme increase LC? - What Adverse Events occur as a result of SABR in the CtE cohort of patients? - What is the patient experience of treatment with SABR for the clinical indications covered within the CtE programme? - What is the cost-effectiveness of providing SABR in three subgroups of patients covered within the CtE scheme (oligometastases (liver), HCC, and pelvis re-irradiation)? - What are the outcomes by indication in the CtE cohort of patients? - Are there any factors from the experience of centres participating in the scheme that should be taken into account in terms of future service provision? - Are there any research findings that have become available during the course of the CtE scheme that should be considered alongside the evaluative findings of the CtE scheme? The final report will follow the NHS England and NICE guidelines for the production of such a report. As well as the final report for NHE England and NICE, peer-review papers will be produced by both UHB and KiTEC, these reports will be on aggregate analyses, and will only include supplementary information from HES/ONS which will have the small numbers suppressed. The information may also be presented at relevant national and international conferences. No outputs are planned specifically for any charities or patient groups [because the focus of the study is to influence commissioning policy (through NICE and NHS England), and it is at the point of any decision to change policy that the findings of the study will be addressed to the public], however, the report containing the results of KiTEC’s analysis for the Commissioning through Evaluation (CtE)” programme, when finalised, will be made publicly available. KiTEC will also produce a publication that will be made available to the public through open access; a direct link will be displayed on the KiTEC website.

Processing:

The aggregated SABR procedures numbers by centre, is required on a quarterly basis. This number will be compared with the number of procedures included in the database. Should there be a discrepancy, the data lead or data processor for that centre will need to be contacted. For the avoidance of doubt, this will not require HES data to be shared with the participating centres. KiTEC are acting as the sole Data Controller in relation to this study, and have engaged University Hospitals Birmingham (UHB) for the data management element of the study (managing and administering the database), acting under instruction from KiTEC. KITEC are responsible for undertaking any analyses, therefore pseudonymised patient-level data will need to be shared between UHB and KiTEC. UHB will create a pseudonymised extraction of data on a bi-monthly basis which will be sent to KiTEC for them to complete their analyses. All data shared from UHB to KCL will be pseudonymised. In addition, identifiable data captured in the SABR database will need to be linked to relevant HES/Mortality records. This will enable accurate mortality data to be captured, as well as data on other diagnoses or procedures patients may have had at other departments (internal or external to the treating hospital), thus increasing the accuracy of the recording of both adverse event and mortality in the database. This process will require the collection of identifiable patient data (NHS number as a minimum), as well obtaining access to equivalently identifiable HES/Mortality patient records. UHB will receive and process the data. In order to answer the evaluation question whether the treatment offers to these patients improved clinical outcomes in combination with less side effects and improved quality of life descriptive statistics will be presented to characterise the patient populations. This will include demographic and clinical factors. Estimates of the rates of overall survival and progression-free survival (local control) at 1 year and 2 years following treatment with SABR will be calculated using the Kaplan-Meier method, for each of the three included indications (oligometastatic disease, re-irradiation of pelvis/spine, and hepatocellular carcinoma). A measure of the precision of each estimate will be provided by 95% confidence intervals. Kaplan-Meier graphs will be presented for key outcomes. Survival estimates will be compared narratively with the ‘target outcomes’ for each condition (i.e. not using statistical tests), since the target outcomes were informed by a mixture of relevant literature and expert opinion, and therefore, there is no appropriate ‘sampling error’ which can be attributed to these outcomes (a requirement of statistical tests). The number and percentage of adverse events following treatment with SABR will be presented with 95% confidence intervals, for each of the three indications. The cost-effectiveness of providing SABR in cohorts of patients included in the CtE scheme (oligometastases, re-irradiation and hepatocellular carcinoma (HCC)) will be evaluated using a commonly applied Markov model of cancer. The model will include three states: progression free; progression; and death. Progression will be defined as the failure of local control. Patients accrue costs and quality-adjusted life expectancy for each period or time cycle they spend in either progression-free or progression states. Patients transit in the direction of the arrows with a given probability at the end of each time cycle and the model is run over a defined number of cycles (periods of time) allowing an estimate of total costs and quality-adjusted life expectancy for the cohort over the specified time period. The following describes the flow of data for the SABR Study without data from NHS Digital: 1) Treatment centres collect data about the patients 2) Treatment centres submit the data (routine clinical data, quality of life, pain symptoms, etc.) to UHB. 3) UHB store the data on their servers 4) UHB send bi-monthly extracts of the pseudonymised data to KiTEC for analysis The following describes the flow of data for the SABR Study including a supply of data from NHS Digital: 1) Treatment centres collect data about the patients 2) Treatment centres submit the data (routine clinical data, quality of life, pain symptoms, etc.) to UHB. 3) UHB store the data on their servers 4) UHB provide patient identifiers to NHS Digital which NHS Digital will use to identify relevant HES and mortality data 5) NHS Digital supplies hospital and mortality data to UHB 6) UHB stores the data on their servers 7) UHB send bi-monthly extracts of the pseudonymised data to KiTEC for analysis The only data linkage permitted with NHS Digital data is the link with the data submitted by NHS treatment centres. 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).


Project 3 — DARS-NIC-381984-B7X3S

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Sensitive, and Non Sensitive

When: 2016/04 (or before) — 2019/02.

Repeats: Ongoing

Legal basis: Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • Summary Hospital-level Mortality Indicator (SHMI) data split by trust and diagnosis group
  • Office for National Statistics Mortality Data
  • Civil Registration - Deaths
  • Summary Hospital-level Mortality Indicator

Yielded Benefits:

A range of direct benefits to healthcare have already been delivered during the course of this project. In summary: • NHS Organisations are provided with the information necessary to provide clinical quality and patient safety assurance within their organisation • NHS Organisations are able to identify & interrogate areas of poor performance allowing for evidence based health service management • NHS Organisations are able to identify areas of good performance increasing the understanding of best practice in healthcare To give a specific example: Within the module NHS hospitals are able to quickly identify areas of potential concern relating to mortality within their organisation. Such areas are then investigated further. When appropriate & authorised, the ability to identify a cohort of patients within the organisations and undertake appropriate clinical case note review is invaluable as a part of ensuring good hospital governance. This process is used by hospitals up and down the country. Without using the data sets being requested it would be impossible to deliver this benefit to the NHS. This would have a significant impact on a sizeable number of NHS Hospitals across the country. It is not appropriate to set a target date for this work as the work streams are ongoing and the outputs already form part of a significant number of NHS organisations’ governance assurance processes.

Objectives:

To produce/analyse statistics using births/deaths data solely to help the NHS perform its duties.

Expected Benefits:

The output of analytics available to NHS organisations using the HED system enable NHS clinicians and managers to increase the understanding of patient outcomes and identify areas for improvement and best practice. A range of direct benefits to healthcare have already been delivered during the course of this project. In summary: • NHS Organisations are provided with the information necessary to provide clinical quality and patient safety assurance within their organisation • NHS Organisations are able to identify & interrogate areas of poor performance allowing for evidence based health service management • NHS Organisations are able to identify areas of good performance increasing the understanding of best practice in healthcare To give a specific example: Within the module NHS hospitals are able to quickly identify areas of potential concern relating to mortality within their organisation. Such areas are then investigated further. When appropriate & authorised, the ability to identify a cohort of patients within the organisations and undertake appropriate clinical case note review is invaluable as a part of ensuring good hospital governance. This process is used by hospitals up and down the country. Without using the data sets being requested it would be impossible to deliver this benefit to the NHS. This would have a significant impact on a sizeable number of NHS Hospitals across the country. It is not appropriate to set a target date for this work as the work streams are ongoing and the outputs already form part of a significant number of NHS organisations’ governance assurance processes.

Outputs:

The sole outputs are analytics designed to assist the NHS in interrogating and deriving understanding from the SHMI indicator. Where appropriate this will include the ability to support the identification of areas of care apt for clinical case note review. Such outputs are solely provided either via: • a Module made available within the HED system, or • aggregate small number censored reports Within the HED system: The module can contain aggregate-level information and low-level information. The level of data that can be viewed within a module depends on the access level of the named individual user and which organisation they are working for. As such, access to low-level information, including small numbers, is strictly controlled in line with the access controls outlined in the above section on ‘Processing activities’. This means that Hospitals will only have access to low-level information for their own data. Outputs are to be used solely for the purpose of assisting the NHS. Outputs will be used by NHS Clinicians and Managers to: • Assure and manage clinical quality and patient safety within NHS Organisations • Identify trends requiring a clinical review of patient pathways. (Hospital-based users with Caldicott approval are able to investigate metrics and ‘drill-down’ to patient-level information, including local patient identifiers, in order to conduct clinical case note review and route cause analysis) • Increase the understanding of patient outcomes • Identify potential areas for improvement in clinical quality or operational efficiency either within a Hospital or a local healthcare economy • Identify areas of best practice either within hospital Trusts or local healthcare economies All of the above will serve to increase the understanding of patient outcomes in regard to quality, safety, productivity and efficiency benchmarking within the NHS. It is not appropriate to set a target date for this work as the work streams are ongoing and the outputs already form part of various NHS organisations’ routine reporting and governance assurance processes.

Processing:

Data received from HSCIC is only processed by authorised University Hospitals Birmingham NHS Foundation Trust (UHB) staff on site at UHB. No third parties are involved in the processing of the data. Data received from the HSCIC by UHB is processed in line with a strict protocol and is stored in an access restricted server. This process was recently audited by the HSCIC and found to be robust. The data received is used to create analyses which are provided to the NHS in order to help it perform its duties. Such analysis is solely provided either: via the online Healthcare Evaluation Data (HED) tool, or via bespoke reports. The level of data that can be viewed within the system depends on the access level of the named individual user and which organisation they are working for. No record-level data is provided to any organisation, except where an individual working within an NHS Hospital has the authorisation of their Hospital’s Caldicott Guardian to access patient level information, including sensitive items, for the purposes of conducting clinical review of cases. In such instances a summary (but not all fields present in the raw data) is provided at spell or patient level. For example, the summary will give details of the admission date, method and diagnosis for a patient but not all field relating to the episodes as recorded in the raw data (e.g. date of death is not provided). The data available to users will only relate to patients treated at that Trust.