QResearch Proposal to NICORProfessor Julia Hippisley-Cox

GPClinical Epidemiologist

Director QResearchDirector ClinRisk Ltd

Member ECC NIGB

LondonJuly 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

Background to QResearch

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

Structure & organisation

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

Funding and outputs

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

Expansion & Data Linkage 2011

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

MINAP-Q linkage: objectives and benefits

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?

So far

Discussion