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QResearch Proposal to NICOR

QResearch Proposal to NICOR. London July 2011. Professor Julia Hippisley-Cox GP Clinical Epidemiologist Director QResearch Director ClinRisk Ltd Member ECC NIGB. Background to QResearch. Pseudonymised patient level repository 14m patients registered with 670 UK practices

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QResearch Proposal to NICOR

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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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