Transcript QResearch Proposal

London
July 2011
Professor Julia Hippisley-Cox
GP
Clinical Epidemiologist
Director QResearch
Director ClinRisk Ltd
Member ECC NIGB
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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
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Hypothesis generation/testing
Output papers in peer reviewed journals
Generation new knowledge to improve patient care
Subsets licensed to academics UK universities
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Management board – UoN & EMIS
National Advisory Board
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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
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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
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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
Objectives
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evaluate completeness & accuracy of information from
MINAP linked to QResearch to determine its incremental
value for CVD research
Hypothesis
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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
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More research, better research, increased potential to
improve patient outcomes
Unlikely to be income generating
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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?