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

Transcription

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

2 Background and Discover Overview Slide 2

3 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

4 NW London is an attractive place to do research and already attracts significant research resources NW London is an attractive place to do research World Class Research teams NW London attracts significant research resources M per year Approximate figures Exceptionally diverse patient population High quality registries on specific cohorts Strong relationship with key stakeholders Secondary care CharitiesGovernment Others (Ind., DoH, EU) Community NW care London Sources of funding

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

6 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.

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

8 There are 2,080,239 NWL patients in the WSIC data warehouse equating to 90% of the registered population 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 273,262 Hounslow 304,468 Ealing 315, ,108 Central London H&F West 196,088 London 218, ,591

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

10 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 care data Secondary care data Mental health Community Social care Number of records (active patients) Free text Consent to contact Discover (North West London) CPRD 368 GP practices >600 GP practices Yes Yes Yes Yes >2 million No Yes Yes No No No 5 million No No HESID No Yes No No No National No No THIN OPCRD RCGP Research & Surveillance 562 GP practices 650 GP practices 230 GP practices No No No No 3.75 million (17m in active patients) Some Yes (HES) No No No 5 million Some No No No No No No No Via GPs

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

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

13 Working with you. We have two engagement priorities: Promotion of register to patients some ideas a) Floorwalker (funded by ICHP) b) Leaflets and stands c) Engagement with patient groups and communities d) Sign up whilst enrolling patients on clinical studies 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? Promotion of Discover to researchers a) Run a launch event/ attend existing events b) blast to staff c) Use of newsletters d) On computer screens and intranet

14 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

15 Thank you and questions 5/16/