NHS Digital Data Release Register - reformatted

University of Northumbria at Newcastle

Project 1 — DARS-NIC-158112-L0R5C

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

Sensitive: Non Sensitive

When: 2020/10 — 2020/10.

Repeats: One-Off

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • Diagnostic Imaging Dataset

Objectives:

University of Northumbria at Newcastle are undertaking the first work package (Work Package 1 Quantitative Aspect) of this research, which consists of the economic evaluation. No other organisations are involved in this Work Package i.e. only University of Northumbria at Newcastle will determine the nature and processing and access the data from NHS Digital. They are therefore the sole data controller who will process data. This part of the study will be delivered by University of Northumbria at Newcastle; it aims to estimate the clinical and cost-effectiveness of direct referrals to radiology by general practitioners, which will be combined with the qualitative data gathered in primary and secondary care described in work package 2. Its objectives are to: • differentiate and quantify direct (open) access referrals for suspected cancer to radiology tests by GPs • estimate the relevant costs of direct access to radiology tests, any savings or added costs to the NHS and impact on time to diagnosis. • model the clinical and cost-effectiveness of this diagnostic strategy • create a digital map of GP referral processes. The focus of the study will be on 4 cancers: brain, lung, pancreas, sarcoma and on 4 radiology tests: non-obstetric ultrasound, brain MRI, CT, and chest x-ray. Clinical process measures will include median time to radiology test results, to onward referral and time to diagnosis. Cost measures include comparing tariff elements of diagnostic pathways and cost impacts on changes in GP referral and patient attendance patterns. Other organisations involved are: - Cumbria University are conducting the qualitative work package (Work Package 2 Qualitative Aspect) of the research only. They have no role in determining the nature of the research or processing for the economic evaluation, and will not access the data provided by NHS Digital. Work package 2 will be delivered by University of Cumbria and aims to provide an in-depth understanding of: enablers and barriers to GP direct access; the contexts in which GP practices and radiology departments operate; the impact that these have on referral decisions. Its objectives are to explore: • barriers and enablers for GPs referring patients direct to radiology tests • the potential of digital applications and telemedicine to improve GP communications with secondary care (e.g. accessing test results) • implications for commissioners and radiology services of referral options. - Northern Cancer Alliance are contributing to the clinical aspect of the research only. They have no role in determining the nature of the research or processing for the economic evaluation, and will not access the data provided by NHS Digital. - Cancer Research UK are funding the research, but have no role in determining the nature of the research or processing for the economic evaluation, and will not access the data provided by NHS Digital. This study is funded by Cancer Research UK and aims to assess how effectively GPs use direct referrals to radiology tests for investigation of suspected cancers in the North East and Cumbria region. Rapid diagnosis of cancers is important for improving survival rates, and for achieving the national aim of a definitive diagnosis within 28 days of initial presentation for 95% of cancer patients by 2020. National clinical guidelines for suspected cancer were revised in 2015, and GPs are advised to opt for direct referral to diagnostic tests where possible, in order to expedite a diagnosis. The urgent (2 week) referral is the prescribed route to a cancer diagnosis for those with clear symptoms. Direct access to tests can be part of this process, as well as providing GPs with a referral option for patients who do not meet the urgent criteria, but with whom there is still a suspicion of disease. An initial scoping of the literature reveals important evidence about early diagnosis: a correlation between mortality and time to diagnosis, variation in GP use of the urgent referral pathway and mortality and the use of the urgent route. University of Northumbria at Newcastle are the sole Data Controller and together with the Northern Cancer Alliance, and the University of Cumbria applied and secured funding from the Cancer Research UK Early Diagnosis Advisory Group (EDAG) project grant funding stream to investigate GP direct access to diagnostic investigations across the North East and Cumbria. University of Northumbria at Newcastle is conducting the economic evaluation of GP direct access versus 2 week-wait referral. The data requested in this agreement are solely for the economic evaluation. University of Northumbria at Newcastle will be the sole data controller and only organisation processing data for this study. Cumbria University and the Northern Cancer Alliance will not have access to the record level data requested or supplied by NHS Digital. As a piece of research funded by, and conducted on behalf of Cancer Research UK, the study are processing the data under Article 6(1) (e) “processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested the controller”. Additionally, they are using Article 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” to understand how referrals for suspected cancer vary across groups of people (based on age, gender, location, and deprivation), in order that early diagnosis cancer services can be improved for everyone. The objectives are to: * differentiate and quantify direct (open) access referrals for suspected cancer to radiology tests by GPs * estimate the relevant costs of direct access to radiology tests, any savings or added costs to the NHS and impact on time to diagnosis. * model the clinical and cost-effectiveness of this diagnostic strategy * create a digital map of GP referral processes.

Expected Benefits:

Overall, the study will: 1) Inform commissioning and provider decisions and provide a basis for addressing regional variation in patient outcomes 2) Explore the potential of digital applications and telemedicine options to improve referral processes, data-sharing and access to test results Specifically, the research will identify the following benefits which will be reported in the report to the Cancer Alliance and CRUK in September 2020: 1) the cost-effectiveness of direct access to radiology tests for suspected cancers compared to other referral routes (for the cancers analysed) 2) an estimate of the costs savings or added costs to the NHS of direct access to radiology referrals 3) the impact on waiting times and time to diagnosis for direct access to radiology referrals. Specifically the research will produce guidance for policy makers and healthcare professionals on the appropriate referral route for suspected cancers. The outputs from the research will be used by Cancer Research UK and the Early Diagnosis Advisory Group to build the evidence base for earlier cancer diagnosis. This will be used to inform service improvements for earlier cancer diagnosis.

Outputs:

The data requested within this application will be used to establish the cost effectiveness of direct GP access versus the urgent 2 week-wait referral pathway to radiology by GPs for patients in whom cancer is suspected. Clinical process outcomes and costs will be compared along the two pathways. The results will provide a comprehensive picture of GP access and use of direct referral options across the North East and Cumbria and inform the planning of services and will explore the potential of digital applications and telemedicine options for improving the referral and diagnostic test parts of the cancer pathway. It will give recommendations for potential reductions in the time to cancer diagnosis. The final report of results will be submitted to the Cancer Research UK Early Diagnosis Advisory Group in September 2020. This will cover all findings of the study including factors influencing planning and implementation. Once finalised, this will be submitted for publication in open access, peer-reviewed journal(s) with an estimated publication date of September 2020. Target journal: British Journal of Cancer. Further academic paper(s) will be published in open-access, high impact, peer-reviewed journals in health economics. Target journals include: Health Economics, British Journal of Cancer, British Journal of General Practice. A simplified version of the findings will be disseminated by the Northern Cancer Alliance to charities, patient groups of interest, and published on the website. For each paper published, a short presentation or poster will be developed to summarise the findings for a range of stakeholders, including healthcare professionals and findings will be presented at the following events and conferences: NCRI Cancer Conference UK, Early detection of Cancer Conference, The European Cancer Summit, The European conference on Health Economics. In addition, Cancer Research UK and the Early Diagnosis Advisory Group will also disseminate the findings and use the findings to build the evidence base for earlier cancer diagnosis that will impact on policy and practice for earlier cancer diagnosis. All outputs will contain only aggregate level data with small numbers suppressed. Outputs will also be used to support further grant applications.

Processing:

Routinely collected datasets managed by NHS Digital and Public Health England (PHE) will be used as a basis for the analysis. University of Northumbria at Newcastle are requesting the Diagnostic Imaging Dataset (DID) from NHS digital to identify cohorts of referrals from GPs to radiology of patients with suspected cancer. The data extracted will be limited to the North East and Cumbria and is anticipated it will cover a 24-month time period 2015-2017. The Diagnostic Imaging Dataset will provide data on the method of referral, date of referral request, date of request received, date of test request, date of test request received, date of test, date of report, and suspicions of early cancer diagnosis. Data extraction and pseudonymisation will be performed by NHS Digital. Re-identification of individuals from the data is not permitted. The extracted pseudonymised data set will be released to University of Northumbria at Newcastle for processing. The data will be stored on the University of Northumbria at Newcastle password protected network. The data will be shared on a University of Northumbria at Newcastle faculty shared drive with restricted access to the project study team only. The Associate Professor of Health Economics will be the data controller of this shared drive. Data will only be accessed by individuals within the study team who have authorisation from the Associate Professor of Health Economics to access the data for the purpose(s) described, all of whom are substantive employees of University of Northumbria at Newcastle. Storage arrangements of all data will be in accordance with the Data Protection Act 2018 and adhere to all university guidelines around information and data protection. The data provided by NHS Digital will include GP practice code. This is needed to be able to make a distinction between single rural practices and larger rural and urban practices as there are likely to be differences in how they handle referrals onto the direct versus two-week-wait cancer pathway. However, the data will not be reported in this way – there are several single handed practices across the region but the applicant will not link CCG to Practice so they will not be able to be identified. They will only report summary data i.e. aggregated with small number suppressed. University of Northumbria at Newcastle are applying to Public Health England (PHE) in a separate application to the Office for Data Release to obtain Diagnostic Imaging Cancer Dataset linked to HES outpatient data and the routes to diagnosis dataset. The NHS digital data (DIDs) and PHE data will be analysed side by side as a comparison and will not be linked using any patient identifiable information. Linkage of Diagnostic Imaging Dataset data to other data outside of this agreement is not permitted. 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 ie: employees, agents and contractors of the Data Recipient who may have access to that data) There will be no data linkage undertaken with NHS Digital data provided under this agreement that is not already noted in the agreement. Data will only be accessed and processed by substantive employees of University of Northumbria at Newcastle and will not be accessed or processed by any other third parties not mentioned in this agreement.