Discover Overview for Department of Primary Care and Public Health, - PowerPoint PPT Presentation

Discover Overview for Department of Primary Care and Public Health, Imperial College Jess Henderson May 2018 Slide 1

Background and Discover Overview Slide 2

Who are Imperial College Health Partners? The designated Academic Heath Science Network for North West London Brunel University Buckinghamshire New University Imperial College London Central and North West London NHS Foundation Trust Chelsea and Westminster Hospital NHS Foundation Trust The Hillingdon Hospitals NHS Foundation Trust Royal Brompton and Harefield NHS Foundation Trust The Royal Marsden NHS Foundation Trust Imperial College Healthcare NHS Trust London North West Healthcare NHS Trust Central London Community Healthcare NHS Trust West London Mental Health NHS Trust NHS Brent NHS Central London CCG NHS Ealing CCG NHS Hammersmith and Fulham CCG NHS Harrow CCG NHS Hillingdon CCG NHS Hounslow Slide 3 CCG NHS West London CCG

NW London is an attractive place to do research and already attracts significant research resources… NW London is an attractive place to do NW London attracts significant research research resources Approximate figures £M per year World Class Research teams 230-250 50-70 250 10 200 50 Exceptionally diverse patient 150 60 population 100 60 50 High quality registries on specific 0 cohorts Secondary Charities Government Others Community NW care (Ind., care London DoH, EU) Strong relationship with key Sources of funding stakeholders

Current model for recruiting patients is relatively fragmented Study requires 500 Request for Research (e.g. 500 patients) patients Clinicians in NWL receive Consultant Consultant GP surgery GP surgery Other NWL 2 Imperial Coll . R. Brompton 1 institutions research requests Clinicians check in their database n. of patients Patients Patients Patients Patients Patients ... Imperial Brompton GP 1 GP 2 that match to research (e.g. 800) (e.g. 400) (e.g. 300) (e.g. 300) requirements Clinician commits to ? study Clinician contacts patients requesting participation in study / contact through GP if Collectively, NWL could not in treatment have addressed the study's Clinician turns down the requirements 300 avail. study or under-delivers

Patient rights under the NHS Constitution are not being met The NHS pledges to: • anonymise the information collected during the course of your treatment and use it to support research and improve care for others • inform you of research studies in which you may be eligible to participate Patients want to participate in research for a number of reasons: • To improve the quality of their care and outcomes • Learn more about their condition • Improve care for future generations • Give back to the NHS Because of these benefits – the CQC is looking to incorporate research as a measure of quality into its inspections.

What is Discover – the North West London, Health Research Register? Linked primary care, acute, mental Public consent to contact register health, community and adult social care data for over 2.2 million North West London residents Slide 7

Information Sharing Agreements in place with all major NWL health and social care providers and 370 out of 372 GP practices….. Harrow 255,779 Hillingdon Brent 283,108 273,262 Ealing Central 315,353 London West 196,088 H&F Hounslow London 218,590 304,468 233,591 There are 2,080,239 NWL patients in the WSIC data warehouse equating to 90% of the registered population

Discover provides a number of research services • Development of a directly searchable pseudonymised database to assess 1 feasibility down to a GP practice level • A register of identifiable patients who have explicitly consented to be 2 contacted about research • Access to linked data to drive powerful research outcomes through 3 retrospective, observational and real world evidence research Slide 9

How Discover compares with market offerings The data in Discover is linked, enabling researchers to see full patient utilisation of the NWL health system Offering Primary Secondary Mental Community Social care Number of Free text Consent to care data care data health records contact (active patients) Discover 368 GP Yes Yes Yes Yes >2 million No Yes (North West practices London) CPRD >600 GP Yes No No No 5 million No No practices HESID No Yes No No No National No No THIN 562 GP No No No No 3.75 million Some Via GPs practices (17m in active patients) OPCRD 650 GP Yes (HES) No No No 5 million Some No practices RCGP 230 GP No No No No No No Research & practices Surveillance Centre

Example studies going through approval Example 1 Example 2 Wheelchair use in older people living in the Psychological measures can predict community aiming to: response to bariatric surgery: • To describe the clinical characteristics of To access the WSIC data on primary and wheelchair (WC) users aged 65 years and secondary healthcare service usage for 1000 over. patients who have completed psychological questionnaires as part of their clinical screening • To explore the complexities of comorbidities, during 2 years following the questionnaire clinical features and conditions secondary to completion. HbA1c measurements will also be disability influencing wheelchair prescription extracted to measure the impact on diabetes. and to examine the quantity of these additional clinical features across the sample of older wheelchair users. • To compare younger (65-70 years) and older elderly (70+ years) wheelchair users. To estimate NHS costs for supporting older wheelchair users in the community.

We have been through a rigorous approval process with the North West London Data and Cyber Security Governing Group

Working with you…. We have two engagement priorities: Promotion of register to patients – Promotion of Discover to some ideas researchers a) Floorwalker (funded by ICHP) a) Run a launch event/ attend existing events b) Leaflets and stands b) Email blast to staff c) Engagement with patient groups and communities c) Use of newsletters d) Sign up whilst enrolling patients d) On computer screens and on clinical studies intranet e) Letters from Medical Director / inclusion with OP letters etc f) Video on tv screens g) Utilising existing comms channels ie Trust website h) Others?

Eligibility for access to Discover • All North West London Information Sharing Agreement signatories (list of Trusts – full list found here: • Central and North West London NHS Foundation Trust • London North West University Healthcare NHS Trust • West London Mental Health NHS Trust • Central London Community NHS Healthcare NHS Trust • Chelsea and Westminster NHS Foundation Trust • Imperial College Healthcare NHS Trust • The Hillingdon Hospital NHS Foundation Trust • The Royal Brompton Hospital Trust • The Royal Marsden NHS Foundation Trust • Local academic researchers with a research passport or sponsorship from an ISA signatory • Commercial organisations must be partnered with a local NHS or academic researcher to access Discover

Thank you and questions 5/16/2018 15