professor julia hippisley-cox gp clinical epidemiologist director qresearch director clinrisk ltd...
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QResearch Proposal to NICORProfessor Julia Hippisley-Cox
GPClinical Epidemiologist
Director QResearchDirector ClinRisk Ltd
Member ECC NIGB
LondonJuly 2011
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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
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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
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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
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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
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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
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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
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Discussion