NHS Digital Data Release Register - reformatted

University College London Hospitals NHS Foundation Trust projects

109 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

Cancer Alliance access to National Cancer Waiting Times Monitoring Data Set (NCWTMDS) from the Cancer Wait Times (CWT) System - UCLH Cancer Collaborative — DARS-NIC-204565-L5J5F

Type of data: information not disclosed for TRE projects

Opt outs honoured: No - data flow is not identifiable, 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(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (NHS Trust, Network)

Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive

When:DSA runs 2019-01-31 — 2020-01-30 2019.09 — 2024.09. SMLS reported a DPA serious incident; breached contract — audit report.

Access method: System Access
(System access exclusively means data was not disseminated, but was accessed under supervision on NHS Digital's systems)

Data-controller type: UNIVERSITY COLLEGE LONDON HOSPITALS NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. National Cancer Waiting Times Monitoring DataSet (CWT)
  2. National Cancer Waiting Times Monitoring DataSet (NCWTMDS)

Objectives:

This agreement is for the Cancer Alliance for North Central and East London to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity, neither is the UCLH Cancer Collaborative which is hosted by UCLH. UCLH is therefore the lead organisation, and the data controller who processes data. In this agreement, therefore, all references to accessing the data refer to the legal entity - University College Hospital NHS Foundation Trust (UCLH).

Improvements for Cancer patients

The independent Cancer Taskforce set out an ambitious vision for improving services, care and outcomes for everyone with Cancer: fewer people getting Cancer, more people surviving Cancer, more people having a good experience of their treatment and care, whoever they are and wherever they live, and more people being supported to live as well as possible after treatment has finished.

Cancer Alliances

Cancer Alliances, which have been set up across England, are key to driving the change needed across the country to achieve the Taskforce’s vision. Bringing together local clinical and managerial leaders from providers and commissioners who represent the whole Cancer pathway, Cancer Alliances provide the opportunity for a different way of working to improve and transform Cancer services. Cancer Alliance partners will take a whole population, whole pathway approach to improving outcomes across their geographical ‘footprints’, building on their relevant Sustainability and Transformation Plans (STPs). They will bring together influential local decision-makers and be responsible for directing funding to transform services and care across whole pathways, reducing variation in the availability of good care and treatment for all people with Cancer, and delivering continuous improvement and reduction in inequality of experience. They will particularly focus on leading transformations at scale to improve survival, early diagnosis, patient experience and long-term quality of life. Successful delivery will be shown in improvements in ratings in the Clinical Commissioning Group (CCG) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard.
https://www.england.nhs.uk/publication/ccg-iaf-methodology-manual/


Cancer Wait Times (CWT) system

The Cancer Wait Times (CWT) system collects and validates the National Cancer Waiting Times Monitoring Data Set (NCWTMDS), allowing performance to be measured against operational Cancer standards. Data is validated and records merged to the same pathway to cover the period from referral to first definitive treatment for Cancer and any additional subsequent treatments.
The CWT system then determines whether the operational standard(s) that apply were met or not for the patient and the accountable provider(s). The CWT system holds NCWTMDS in a series of pre-aggregated static reports. These reports are available monthly and quarterly data (aligned with the National Statistics for Cancer Waiting Times published by NHS England). Users can query the CWT system to generate reports to feedback on the progress towards meeting these targets.

Cancer alliances are also created to drive improvement in cancer outcomes. Align with the improvement trajectory set for cancer survival (also part of CCG IAF), cancer alliances are set to deliver the Faster Diagnostic Standards (FDS) from April 2020. FDS is part of CWT dataset, referring to the duration between urgent GP referral to patients being told whether they have a cancer diagnosis or not.

The National Cancer Programme has confirmed that FDS, along with 62-day wait, will be key metrics within the 10 year NHS Plan that Cancer Alliances will be held accountable to. Thus without access to the data as outlined in this request, UCLH Cancer Collaborative will not be able to deliver work programme as outlined by the National Cancer Programme.



UCLH Cancer Collaborative - the Cancer Alliance for North Central and East London

University College London Hospitals NHS Foundation Trust (UCLH) will directly access the Cancer Waiting Times System on behalf of UCLH Cancer Collaborative across North Central and East London. The UCLH Cancer Collaborative is hosted by UCLH and covers a population of 3.5 million people.

UCLH Cancer Collaborative works with health organisations across North Central and East London including 11 acute providers, 12 clinical commissioning groups and 4 mental health & community providers.

Acute Providers

• Barking, Havering & Redbridge University Hospitals NHS Trust
• Barts Health NHS Trust
• Homerton University Hospital NHS Foundation Trust
• Moorfields Eye Hospital NHS Foundation Trust
• North Middlesex University Hospital NHS Trust
• The Princess Alexandra Hospitals NHS Trust
• Royal Free London NHS Foundation Trust
• Royal National Orthopaedic Hospital NHS Trust
• The Whittington Hospital NHS Trust
• University College London Hospitals NHS Foundation Trust
• Great Ormond Street Hospital for Children NHS Foundation Trust


CCGs
• NHS Barking and Dagenham CCG
• NHS Barnet CCG
• NHS Newham CCG
• NHS Enfield CCG
• NHS Tower Hamlets CCG
• NHS Haringey CCG
• NHS Camden CCG
• NHS Havering CCG
• NHS Waltham Forest CCG
• NHS Redbridge CCG
• NHS City and Hackney CCG
• NHS Islington CCG

Mental Health and Community Health Providers
• Barnet, Enfield and Haringey Mental Health NHS Trust
• Camden And Islington NHS Foundation Trust
• East London NHS Foundation Trust
• Tavistock And Portman NHS Foundation Trust



Data access

The CWT system provides one organisation (the lead organisation) representing each Cancer Alliance, with access to the following;
a) Aggregate reports (which may include unsuppressed small numbers)
b) Pseudonymised record level data - users can directly download this data from the CWT system
c) I-View Plus tool

UCLH will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' CCG of responsibility. This Cancer Alliance is limited to North Central and East London cancer patients.

A) Aggregate reports including small numbers
Aggregate data is available in the form of reports at Provider (Trust) and Clinical Commissioning Group (CCG) level.
Small numbers may be included in the aggregate data reports and are essential for analyses carried out by lead organisations.

Investigating breaches
NHS England routinely monitors performance and standards using the CWT system, particularly in relation to breaches of the 62 day wait target. Due to the large number of potential Trust/CCG combinations, breach counts could result in small numbers as in some cases there are less than 6 breaches in a whole year. Given that financial penalties are linked to target breaches counts must accurately reflect the true percentage without suppression.

Mitigating risk of re-identification
Risk of disclosure is minimised as the dataset does not include patient demographics (increasing risk of re-identification) that may allow users to identify an individual e.g. there are no age, ethnic categories or geographic breakdowns based on patient postcode.

Additionally, the aggregation categories are such that the data is not at a lesser granular level e.g. the source NCWTMDS data collects information at ICD diagnosis code level, but the CWT system aggregates at tumour group level – e.g. Head & Neck, Upper GI, Lower GI, Breast etc.

B) Pseudonymised record level extracts
NHS England will access record level pseudonymised data which includes the system generated pseudo CWT patient ID.

Any record level data extracted from the system will not be processed outside of the authorised users of the system.

C) i-View Plus .
iView Plus uses cube functionality to allow lead organisations to produce graphs, charts and tabulations from the data through the construction of queries. The data in iView plus is split by operational standard being measured and can then be analysed against a range of dimensions collected in the data and measures such as count, percentage and median. The outputs of iView Plus are aggregate, and no record level data can be obtained, however some queries may result in small numbers and these currently have limited disclosure control applied, see A) for further explanation.
iView Plus holds published data, the lowest organisational granularity is trust level, data can also be aggregated to CCG level and other health hierarchies.

UCLH will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements.

UCLH's use of the data will fall into two separate categories, each requiring different levels of suppression, and onward sharing both within the Cancer Alliance and with wider NHS stakeholders;

Purpose One - Aggregate local reports
Generation of routine Cancer Waiting Times reports at Provider (Trust) or CCG level. Lead organisations will access a summary of the totals for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG they are aligned to). This analysis would then be shared with the providers and commissioners and used to inform service improvement by providing benchmarked comparable data. The format of this report would be in a tabulated or graphical form (i.e. not record level) but may contain small numbers. An example of where small numbers would not be suppressed would be in relation to cases of breaches against a standard where small numbers would be essential to ensure the report is meaningful.

Examples of this type of analysis include:
a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs across the geography
b. Analysis of Cancer Waiting Times performance by treatment modality
c. Grouping length of waits for standards
d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays
e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered)
f. Analysis of flows of patients including analysis by provider trust site
g. Reviewing waits between surgery and radiotherapy for Head and Neck Cancer patients with a maximum recommended wait of 6 weeks
h. Reviewing routes to diagnosis of patients
i. Quantifying treatment volumes by provider organisation including analysis treatment rates

Purpose Two - Sharing of record level data (including free text breach reasons) with providers and commissioners responsible for direct patient care for that patient. This will be for local audit purposes.

The two broad purposes for this would be;

1) To support audit work
2) Investigate individual outliers to the national standards

Pathway analysis will be undertaken, identifying trends in reasons for breaches. The analysis will inform system wide pathway improvements and compliance to the national standards. Examples of potential changes to achieve this could be to support trusts in additional resources and processes and also to facilitate discuss between trusts for example in reaching agreement for diagnostics between trusts.

Examples of the types of reasons for this include;
a. Patients waiting excessively long period of time to seen of received treatment
b. Free text breach reasons identifying areas of concern which require more detail or clarification from provider
c. Identification of 28 day standard exceptions - National guidance states patients who are diagnosed with cancer should be informed face to face, this would highlights numbers of patients who are not told in person by provider
d. Audits to review orphan records which require local providers to review local patients records

Record level data (pseudonymised) will be shared via NHS.net email accounts and access will be controlled by password protecting all files.

Yielded Benefits:

Cancer Alliances have previously had access to Cancer Waiting Times reports and pseudonymised data through the system on Open Exeter, under an agreement with NHS England. This has enabled analysis to inform service improvement both to achieve the national Cancer Waiting Times standards and also wider Cancer pathway improvement work, which will have contributed to oncoming improvements to Cancer survival, and patient experience. Examples of specific work undertaken by this Cancer Alliance previously include:-:- - Baselining mapping work with acute providers to understand cancer pathways, - Monthly reports to inform discussions with Acute Provider CEOs, Cancer Clinicians and Cancer Managers across the area, - Information to support the development of transformational funding bids which focus on pilot work on vague symptom pathways, clinical - Triage and patient navigator work.

Expected Benefits:

1) Benefits type: Supporting delivery of CWT standards
The Cancer Waiting Times standards are key operational standards for the NHS, which aim to reduce the waits for diagnosis and treatment for Cancer patients, which will support improvements to survival rates and improve patient experience. This includes the new 28 day faster diagnosis standard being introduced as a standard from April 2020.
A key enabler to achieve these standards, and thus improve survival and patient experience is the role of Cancer Alliances locally to work with providers and commissioners to improve patient pathways. Access to the Cancer Waiting Times data as detailed in the above will enable Cancer Alliances to have informed discussions and allocate resources optimally to improve performance against these standards. It will also enable Cancer Alliances to work with local providers and commissioners to identify outliers against the standards, and mitigate the risk of similar delays for other patients.

Improvement would be expected on an on-going basis with standards already in place for nine standards:-
• 2 week wait urgent GP referral – 93%
• 2 week wait breast symptomatic – 93%
• 31 day 1st treatment - 96%
• 31 day subsequent surgery – 94%
• 31 day subsequent drugs – 98%
• 31 day subsequent radiotherapy – 94%
• 62 day (GP) referral to 1st treatment – 85%
• 62 day (screening ) referral to 1st treatment – 90%
• 62 day upgrade to 1st treatment – locally agreed standard
In addition this access and use of data will be key in delivering the new 28 day faster diagnosis standard being introduced from April 2020. Trusts are asked to ensure high level of data completeness for this item in 2019/20.

2) Benefits type: Improvements beyond constitutional standards
This access and resulting analysis will enable Cancer Alliances to undertake local analysis beyond the Cancer Waiting times operational standards to support improvements to Cancer patients pathways beyond those already achieved by improving performance against standard set. This could include reviewing times between treatments, or treatment rates.

The overall aim of this type of additional analysis would be to support improvements to Cancer patients survival and experience. The Cancer Taskforce recommendation set out a number of ambitions to be met nationally and locally by 2020 including improving 1 year survival for Cancer to 75%, and improving the proportions of patients staged 1 or 2 to 62%. For both of these improvements to the diagnostic and treatment pathways are key, and require Cancer Alliances to be able to analyse the Cancer Waiting Times dataset to identify sub-optimum pathways and resulting improvements.

Outputs:

Outputs fall into the following categories:

1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways
a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs.
b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions
c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards
d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays.
e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered)
f. Analysis of flows of patients including analysis by provider trust site
g. Analysis of flows of patients across geography including analysis by tumour groups where specialist treatments are required only to be delivered by designated centres, aligning to Improving Outcome Guidance (NICE IOG)
h. Outlier identification including exceptionally long waits to inform individual queries to providers

2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.

The overarching aim of all future analysis/outputs is to inform priorities and potential investment to improve Cancer pathways including reducing Cancer incidence and mortality, improving Cancer survival, improving patient experience, improving service efficiency and meeting national constitution standards relating to Cancer patients.


Processing:

Access to the Cancer Wait Times (CWT) System will enable Cancer Alliances to undertake a wide range of locally-determined and locally-specific analyses to support the Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer.

Only the lead organisation UCLH will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the UCLH servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs.

The CWT system is hosted by NHS Digital, access to and usage of the system is fully auditable. Users must comply with the use of the data as specified in this agreement. The CWT system complies with the requirements of NHS Digital Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality.

Access to the CWT system will be granted to individual users only when a valid Data Usage Certificate (DUC) form is submitted to NHS Digital via the lead organisations Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between the lead organisation and NHS Digital.

Approved users will log into the system via an N3 connection and will use a Single Sign-On (users are prompted to create a unique username and password).

UCLH users will access:

a) Aggregate reports (which may include unsuppressed small numbers)

b) Pseudonymised record level data - users can directly download this data from the CWT system

c) I-View Plus tool (aggregated - access to produce graphs, charts/tabulations from the data through the construction of queries). This will give users access to run bespoke analysis on pre-defined measures and dimensions. It delivers the same data that is available through the reports and record level downloads (i.e. it will not contain patient identifiable data).

Any record level data extracted from the system will not be processed outside of the UCLH unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed.

Users are not permitted to upload data into the system.

Data will only be available for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG that this Cancer Alliance is aligned to).

The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs is via NHS.net email accounts.
Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers.

Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts.

As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/ regional bodies including NHS Improvement, NHS England and Transforming Cancer Services London. Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS Digital to access Cancer Waiting Times data.

Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance.

Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by the Data Controller in fulfilment of their public health function.

The Cancer Alliances will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data.
Typical uses will include:
1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways
a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. As well as the percentage of 62 Day performance, we will also need to look at number of activities, total numbers of patients treated, number of patients treated before and after Day 62
b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions
c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards (e.g., activity and breach share by first seen trust and treatment trust, and by tumour site)
d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays.
e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered)
f. Analysis of flows of patients including analysis by provider trust site, by tumour site (e.g. median pathway durations, and the ability to track changes over time with "run charts" as per NHS Improvement requirements)
g. Outlier identification including exceptionally long waits to inform individual queries to providers

2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.

BRIGHTLIGHT: Do specialist cancer services for teenagers and young adults (TYA) add value? — DARS-NIC-384137-V8F6H

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y, Identifiable (Section 251 NHS Act 2006)

Legal basis: Section 251 approval is in place for the flow of identifiable data, Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: No (NHS Trust)

Sensitive: Sensitive, and Non Sensitive, and Non-Sensitive

When:DSA runs 2019-01-01 — 2021-12-31 2016.09 — 2016.11. SMLS reported a DPA serious incident; breached contract — audit report.

Access method: One-Off

Data-controller type: UNIVERSITY COLLEGE LONDON HOSPITALS NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. Hospital Episode Statistics Outpatients
  2. Hospital Episode Statistics Accident and Emergency
  3. Hospital Episode Statistics Admitted Patient Care
  4. Hospital Episode Statistics Accident and Emergency (HES A and E)
  5. Hospital Episode Statistics Admitted Patient Care (HES APC)
  6. Hospital Episode Statistics Outpatients (HES OP)

Objectives:

UPDATE NOTE: This is a minor update to a previous HES extract in order to rerun the linkage and
1) obtain the 3 and 5 digit provider codes,
2) include amended details for 37 individuals for whom no linkage match could be found in the previous run. ******************************************************************************************************************

Cancer is the second leading cause of death for young people accounting for 11% of deaths in Teenagers and young adults (TYA) aged 15-24 . While potentially curable for many patients, there is evidence that outcomes for some cancers have not improved in line with those achieved for children and older adults. The needs of TYA are poorly met by the well-developed cancer services traditionally tailored towards the needs of children and those for older adults with cancer.

A number of issues advocate special attention for young people with cancer and there is a critical need for a robust evidence base to support current and future health care policies. For example, a unique spectrum of cancer types occur in TYA which are distinct from those affecting younger children and older adults. A cancer diagnosis in TYA has an acute and unique impact on a critical and complex stage of life development, disrupting physical health, social and educational goals as well as psychological wellbeing.

Concern has arisen that traditional cancer services are insufficient for TYA. Young people frequently fall between children’s and adult cancer services, into what has been described as 'the grey zone' or 'no man's land'. The consequence of this is realised when lesser improvements in outcomes for young people are observed compared to children and some older adult cancers.

There are several potential causes of the shortfall in outcome (survival) improvements which include but are not limited to:
• delays in cancer diagnosis;
• unfavourable tumour biology as increasing age;
• inconsistent use of molecular diagnostics that may be central to optimal care;
• limited access to clinical trials;
• lack of concordance with treatment protocols; and
• a lack of specialist supportive care.

Young people themselves describe unsatisfactory experiences of care which include:
• lack of recognition of their autonomy;
• failure to maintain their need to continue to meet normal life goals during treatment;
• lack of peer support;
• care by staff with little experience of young people; and
• inappropriate care environments.

Psychosocial and healthcare needs of this specific population is increasingly highlighted in the international literature. Place of treatment and cancer care, in terms of both disease and age appropriate specialist settings is increasingly acknowledged as potentially significant to the outcome for TYAs with cancer .

In recent years there has been a rapid expansion in the availability of dedicated services for TYA in the UK. It is now accepted that young people should have access to specialist cancer care. Thirteen principal treatment centres are currently in place. Key components of services include tumour site-specific expertise delivered in conjunction with meeting the broader psychosocial needs of young people to support successful navigation of critical life transitions.

The NICE Improving Outcomes Guidance does not direct that care of all 13-24 year olds will take place in specialist centres. Instead, it recommended that all patients aged less than 19 years are referred to principal treatment centres for their treatment. Those 19 years and over should be offered 'unhindered access to age-appropriate care'. This division resulted from: a requirement to be consistent with the National Service Framework for Children and Maternity Services; and in recognition of the heterogeneity of medical and personal need in older young people; and finally, an acknowledgment that there was insufficient persuasive evidence to mandate a greater degree of centralisation of care.

Thus, 19-24 year olds should be offered choice of place of care, either referral to principal treatment centres or more local, adult cancer services. Initiatives to support information giving to assist young people to decide on a place of care have begun but their effectiveness is as yet unknown (www.nhs.uk/young-cancer-care/pages/cancer-care-choices.aspx). Other settings of non-specialist care include 'shared care centres', usually the closest local hospital to an individual patient’s home, where management of acute complications of treatment, and other aspects of care, may occur either in children’s or adult services.

University College London Hospitals NHS Foundation Trust (UCLH) requires HES data in order to derive a measure of specialist care for the BRIGHTLIGHT teenage and young adult (TYA) cancer cohort study, specifically the proportion of overall hospital care taking place in dedicated teenage cancer centres or specialist cancer centres within the first 6 months of diagnosis. This information will then be used to evaluate the added benefit to patients of being treated at a specialist unit in relation to their general health and wellbeing, and the cost-effectiveness of specialist care in comparison to other types of cancer care.

Yielded Benefits:

To date detailed understanding has been gained of recruitment of young people to research, which has contributed to the NIHR investing in the infrastructure to specifically improve the involvement of young people in research. Also a detailed understanding has been gained of the culture of teenage and young adult cancer care delivery from a focused ethnography study, which will help guide additional analysis of the HES data in refining the scale (referred to in output 1). There have been a number of benefits and positive outputs from what has been learnt about conducting a cohort study with young people. First, a process of working with young people as co-researchers and collaborators in research has been established (Taylor et al. 2011; Gibson et al 2012; Fern et al. 2013; Taylor et al. 2015a; Taylor et al. 2016; Taylor et al. 2017; Taylor et al. 2018). The latter referenced paper presents an overview of this experience with guidance to other researchers; this guidance has been presented and shared in conferences and other research teams nationally and internationally contact the research team for support in user involvement (also see a blog written for international clinical trials day for the NIHR: https://www.nihr.ac.uk/blogs/does-patient-and-public-involvement-and-engagement-ppie-in-research-really-make-a-difference/6264). A further benefit relates to the recruitment of young people to research. Recruitment of young people to clinical trials is well established as being problematic. The model of recruitment into the cohort had been tested during feasibility work and was thought to overcome a number of the challenges previously reported. However, despite national buy-in and much publicity, recruitment was not as successful as the team had planned, taking much longer to recruit the cohort. Additional adjunct studies and reviews were undertaken in order to better understand the pitfalls and to make recommendations for improving young people’s recruitment to cancer research (Fern et al. 2014; Kenten et al. 2017; Fern and Taylor 2018). This was accompanied by meetings with key stakeholders who could influence recruitment, including the Association of the British Pharmaceutical Industry, NIHR, NHS England, and the National Cancer Research Institute. Recruitment to trials has become a key objective in the recent cancer strategy (recommendation 45) and based on the BRIGHTLIGHT experience, members of the team are central to work that is commencing in 2019 looking at re-configuring the existing research workforce to achieve the target to recruit 50% of young people to clinical trials by 2025.

Expected Benefits:

UCLH are determining whether there is a benefit to TYA patients from specialist services and if so, where that benefit lies. UCLH will for the first time calculate the cost effectiveness of a specialist service. The information about costs of TYA services will be informative of the costs and cost effectiveness of specialist services for other uncommon conditions.

The NICE 2014 review of Improving Outcome Guidance (2005) which detailed how services should be provided for this population, has concluded that no update of this guidance can be made until BRIGHTLIGHT is complete. The future of TYA cancer services therefore depends on the study being conducted according to the protocol.

Outputs:

The outputs listed below will be presented at the following conferences- Teenage Cancer Trust (TCT) International Cancer conferences, National Cancer Intelligence Network (NCIN) and International Society for Paediatric Oncology (SIOP) annual conference, National Cancer research Institute (NCRI) annual conference (Oct 2017). There is a conference planned for 2017/18, Find your sense of tumor. The outputs are also included in the NIHR Annual report and available on BRIGHTLIGHT website.

Outputs will involve -
1) a study specific measure of specialist care (April 2016) for each individual cancer patient,
2) research articles in peer review journals (anticipated journals include Lancet Oncology, British Journal of Cancer, European Journal of Cancer (Dec 2017),
3) patient newsletters
4) funding reports to the NIHR (Dec 2017).
5) Assessment of what proportion of the TYA cancer population received care at specialist centres between 2012-2014 and whether there was equitable access according to socio-demographic characteristics, e.g. socioeconomic group, ethnic group (Dec 2016);
6) Determine the benefit to patients receiving care at specialist TYA units in comparison to those who received care at general cancer units through evaluation of quality of life measures;
7) Assess the cost-effectiveness of specialist TYA care compared to other models of care. Other models of care will be general adult care and cancer-specific centres (e.g. bone, sarcoma).

All outputs will be aggregate level with small numbers suppressed in line with the HES analysis guide.

Processing:

Each study participant will have linked in-patient (including day case) HES admissions data recording their NHS number, HES_ID, episode start and end dates, episode order, consultant code, and provider code. HES data will also be linked to the scores on the EQ5D, a health status utility score, to enable health economic analysis to be calculated. This will also be undertaken at University College London (UCL).

UCLH will provide the HSCIC with study ID, NHS number and date of birth for linkage to HES. The HSCIC will provide the linkage to HES APC, OP and A&E.
HES cleaning will then be undertaken by UCL to ensure no duplicate episodes, no multiple admissions less than 2 days apart with the same HES_ID, no admission entries allowed after date of death (if deceased); admissions limited to any occurring from and which overlap the date of diagnosis.

Consultant and provider codes will be checked and linked against a TYA lookup database compiled by the BRIGHTLIGHT study team, and each episode coded as TYA or not. This will be repeated for any site specialist care.

Once the data is received by UCLH, UCLH will use the data to produce look up tables and lists of hospitals that provide specific specialist services. The data along with a hospital code will be sent to UCL to process. The outputs will not identify at individual hospital level, the outputs will identify the specialist service as a whole.

The look-up tables and lists of hospitals that provide TYA and tumour-specific specialist care will be compiled from knowledge of current service configuration. After this has been checked by key professionals working within cancer services in England, this information, with hospital/Trust code, will be sent to UCL to link to HES data. The outputs will not identify outcomes at individual hospital level, the outputs will identify the specialist service as a whole.

Overall and TYA/site specific in-patient activity will be calculated for each participant by aggregating length of stay across all episodes extending up to 6 months after diagnosis.

All data will be processed within the Department of Applied Health Research, University College London and University College London Hospitals NHS Foundation Trust . All individuals with access to the data are employed by UCL or UCLH no other third party will have access to the data.

Project 3 — DARS-NIC-148324-V6WWJ

Type of data: information not disclosed for TRE projects

Opt outs honoured: N

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Purposes: ()

Sensitive: Sensitive, and Non Sensitive

When:2016.09 — 2016.11. SMLS reported a DPA serious incident; breached contract — audit report.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report

Objectives:

The aim of the study is to establish the value of microbleeds (MB) and genetic factors in predicting symptomatic ICH following anticoagulation to prevent recurrent ischaemic stroke due to AF.