The power and potential pitfalls of working
with linked records in public health research
and practice
John McGeagh, PhD | NIHR CLAHRC West
Collaboration for Leadership in Applied Health
Research and Care
What is data linkage?
“bringing together two or more sources
of information which relate to the same
individual, event, institution or place.”
 Unique identifier – deterministic
 Multiple fields – probabilistic
Why is it important?
 Enrich data
 Environmental factors
 Continuity of care
Challenges
 Ethical / legal
Opt-in/Opt-out
Deductive-disclosure
 Technical
Hosting protocol
 Social
Public anxiety
DATA LINKAGE IN PRACTICE
Care.data
“The care.data programme will bring together
securely, health and social care information from
different settings in order to see what’s working really
well in the NHS and what could be done better.”
 Link GP records to secondary care
 Provide to third party researchers:
academics, pharmaceutical companies, insurance companies
The benefits…
BIG DATA
– Can answer smart questions
 Early diagnosis
 Disease prevention
 Cost effectiveness and standardisation
What went wrong?
18 Feb 2014
25 Feb 2014
26 Feb 2014
Sept 2015
Local Schemes
Bristol, North Somerset, and
South Gloucestershire (BaNES*)
Cheltenham, Gloucestershire
Local Shared Care Record
Devon
*BaNES considering joining the scheme
Connecting Care
 Connects primary, secondary, tertiary
Opt-out
 Point of care
Go Live in 2013. Expanding to 10,000 users by 2020
 No secondary use of data
Care.data fallout. Looking to expand to include secondary use
Organisations involved in Connecting Care:
Bristol Clinical Commissioning Group;
North Somerset Clinical Commissioning Group;
South Gloucestershire Clinical Commissioning Group;
Bristol City Council;
North Somerset Council;
South Gloucestershire Council;
North Bristol NHS Trust;
University Hospitals Bristol NHS Foundation Trust;
Weston Area Health NHS Trust;
GP Practices in South Gloucestershire, North Somerset and Bristol;
Bristol Community Health;
North Somerset Community Partnership;
Sirona Care and Health (South Gloucestershire);
BrisDoc;
Avon and Wiltshire Mental Health Partnership NHS Trust;
Bristol Mental Health;South Western Ambulance Service NHS
Foundation Trust;
West of England Academic Health and Science Network;
South, Central and West Commissioning Support Unit.
LINKED DATA AND THE CLAHRC
Reach West
www.reachwest.org.uk
 Register of patients willing to take part in
research
 Linkage of NHS medical and related records
-
Informed about relevant research projects
Provide anonymised data for research
 Matches interested people to high quality
research projects
Reach West
www.reachwest.org.uk
 Patients and members of the public
Give consent to join Reach West and have data
linked
– Invited to participate in relevant research projects
- Provide individual informed consent to take part
–
 Researchers
–
Apply to Reach West for help recruiting eligible participants or for
anonymised data
Reach West
www.reachwest.org.uk
Researcher
Search
Reach
West
Website
Data warehouse
Integration & Link
CCGs*
Participant
*Initially pilot with UHBT
Conclusions
 Data linkage has huge potential
 Must be treated with care to safeguard identity
 On-going initiatives to improve availability of
data for research purposes
Acknowledgements
CLAHRC West
THANK YOU
[email protected]
JOHN.MCGEAGH
JOHNMCGEAGH