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

Slide 3

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 CCG NHS West London CCG

NW London is an attractive place to do research and already attracts significant research resources…

World Class Research teams Exceptionally diverse patient population High quality registries on specific cohorts Strong relationship with key stakeholders NW London is an attractive place to do research NW London attracts significant research resources

10 50 60 60 50 100 150 200 250

50-70 230-250

Sources of funding £M per year

Secondary care NW London Charities Government Others (Ind., DoH, EU) Community care

Approximate figures

Current model for recruiting patients is relatively fragmented

Clinicians check in their database n. of patients that match to research requirements

Request for Research (e.g. 500 patients)

Patients Imperial (e.g. 800)

Consultant Imperial Coll.

Consultant

• R. Brompton

GP surgery 1 Clinicians in NWL receive research requests

Patients GP 1 (e.g. 300) Patients GP 2 (e.g. 300)

Patients ...

GP surgery

2

Other NWL institutions

Patients Brompton (e.g. 400)

Clinician commits to study

? Study requires 500 patients

Clinician contacts patients requesting participation in study / contact through GP if not in treatment

300 avail.

Clinician turns down the study or under-delivers Collectively, NWL could have addressed the study's requirements

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?

Slide 7

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

Information Sharing Agreements in place with all major NWL health and social care providers and 370 out of 372 GP practices…..

Brent Harrow

Central

London West

London H&F

Hounslow Ealing Hillingdon 283,108 273,262 255,779 196,088 304,468 218,590 233,591

There are 2,080,239 NWL patients in the WSIC data warehouse equating to 90% of the registered population

315,353

Discover provides a number of research services

Slide 9

• Development of a directly searchable pseudonymised database to assess

feasibility down to a GP practice level

• A register of identifiable patients who have explicitly consented to be

contacted about research

• Access to linked data to drive powerful research outcomes through

retrospective, observational and real world evidence research

1 2 3

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) 368 GP practices Yes Yes Yes Yes >2 million No Yes CPRD >600 GP practices Yes No No No 5 million No No HESID No Yes No No No National No No THIN 562 GP practices No No No No 3.75 million (17m in active patients) Some Via GPs OPCRD 650 GP practices Yes (HES) No No No 5 million Some No RCGP Research & Surveillance Centre 230 GP practices No No No No No No

The data in Discover is linked, enabling researchers to see full patient utilisation

• f the NWL health system

How Discover compares with market offerings

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

• ver.
• 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

• f 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.

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.

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

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

• n 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) Email blast to staff c) Use of newsletters d) On computer screens and intranet

Working with you….

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

15

5/16/2018