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QResearch Proposal to NICOR London, July 2011

QResearch is a pseudonymised patient-level repository for research, generating new knowledge to improve patient care. Learn about the expansion and data linkage to enhance cardiovascular research. Find out about objectives, benefits, approvals, funding, and future considerations.

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QResearch Proposal to NICOR London, July 2011

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  1. QResearch Proposal to NICOR London July 2011 Professor Julia Hippisley-Cox GP Clinical Epidemiologist Director QResearch Director ClinRisk Ltd Member ECC NIGB

  2. Background to QResearch • Pseudonymised patient level repository • 14m patients registered with 670 UK practices • Set up by UoN and EMIS in 2002 • Not-for-profit • Dedicated for research • Hypothesis generation/testing • Output papers in peer reviewed journals • Generation new knowledge to improve patient care • Subsets licensed to academics UK universities

  3. Structure & organisation • Management board – UoN & EMIS • National Advisory Board • EMIS NUG (ie practices) • 2 patient reps • RCGP • BMA • GPC • EMIS & UON • ? Reps from devolved administrations. • Scientific advisory board • Blanket REC approval for specific projects which have been peer reviewed – annual report

  4. Funding and outputs • Data licensed specific peer reviewed projects • No infrastructure funding • Income from grant applications • Non commercial • Heavily subsidised by EMIS and UoN - part of EMIS corporate social responsibility • Practices not paid but have QFeedback system • All outputs published made publically available for public benefit • Large number high profile research papers www.qresearch.org

  5. Expansion & Data Linkage 2011 • Decided to expand QResearch to all EMIS practices who consent (up to 5,500) • Decided to link to other data sources • Data linked to deprivation in 2002 • Linked to ONS cause of death in 2007 • REC, NIGB, professional and patient rep approval in 2011 to extend to • HES • Cancer registry • MINAP

  6. MINAP-Q linkage: objectives and benefits Objectives • evaluate completeness & accuracyof information from MINAP linked to QResearch to determine its incremental value for CVD research Hypothesis • improve the ascertainment of CVD events • Improve precisionof CVD outcome (e.g. type & timing of the event • Increase potential utility for prognostic modelling & drug safety research Benefits • More research, better research, increased potential to improve patient outcomes • Unlikely to be income generating

  7. So far • REC, NIGB, professional and patient approvals • Application to NICOR completed • Request for license to selected fields for full MINAP dataset • Secured internal funding from QResearch • Evaluation of linkage & benefit for research • Is linkage possible from NICOR perspective • Licence terms? • How might it work? • How might it be evaluated?

  8. Discussion

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