Professor Julia Hippisley-Cox GP Clinical Epidemiologist Director QResearch Director ClinRisk Ltd Member ECC NIGB London July 2011

 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

 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

 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

 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

Objectives  evaluate completeness & accuracy of information from MINAP linked to QResearch to determine its incremental value for CVD research Hypothesis  improve the ascertainment of CVD events  Improve precision of 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

 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?