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FACILITATING RESEARCH | 37
Dealing with data
Stop and start
The Wellcome Trust has been working to enhance
researchers’ access to patient data.
Clinical Research Facilities are
helping to improve clinical practice.
1 2
Personal information, such as that
held in patient records and largescale
databases, offers huge
potential for health research. The
Wellcome Trust has been working to
ensure that these resources can be
used more widely in research, with
due safeguards to maintain data
confidentiality and security.
Sir Mark Walport, the Trust’s Director,
and the Information Commissioner,
Richard Thomas, conducted a Data
Sharing Review, publishing a report in
July 2008, which looked at the use and
sharing of personal data in the public and
private sectors. One of their conclusions
was that greater use could be made of
personal data in research, with principles
of data confidentiality extending to
researchers as well as health
professionals.
The Trust emphasised the potential
public benefits of greater data access in
its input to the draft NHS Constitution,
published in June 2008. The Trust was
also involved in discussions with the UK
Department of Health on the 2008
revision to the Health and Social Care
Act. The updated Act allows for patient
information to be shared for medical
research when there are significant
potential public benefits.
In May 2008, the Trust hosted a national
consensus meeting involving GPs,
researchers and patient groups, aiming
to develop guidance for best practice in
the use of patient records for research.
As well as agreeing on the importance of
patient confidentiality, delegates
supported a number of principles,
including the need for transparency,
clearly defined processes for the use of
data, and improved public awareness of
patient record use in research. A
consensus document, endorsed by the
Royal College of General Practitioners,
will be published in 2009.
The Trust also responded to several
consultations, including the General
Medical Council’s consultation on
consent and confidentiality and the NHS
Connecting for Health consultation on
the wider use of patient information.
Finally, a new e-health funding
partnership with three Research
Councils has sought to stimulate and
support the use of electronic databases
in health research. A total of £10.6 million
was awarded to 17 projects, with the
Trust contributing £9.3m. The awards,
announced in July 2008, included three
public engagement projects exploring
the issues surrounding use of personal
information in health research.
Spotlight on personal information:
www.wellcome.ac.uk/About-us/Policy/
Spotlight-issues/Personal-information/
Studies at Wellcome Trust Clinical
Research Facilities (CRFs) have
revealed the benefits of smoking bans
and led to fewer complications after
abdominal surgery.
The Edinburgh CRF provided support for
the STOPIT (Study of Public Place
Intervention on Tobacco Exposure) study,
funded by NHS Health Scotland, which
provided dramatic evidence of the health
impact of passive smoking. Smoking in
public places was banned in Scotland a
year before the English ban. During this
time, admissions for acute coronary
syndrome dropped by 17 per cent in
Scotland but only 4 per cent in England.
The Cambridge CRF has been used in a
large, Trust-funded pilot study evaluating
a stepwise primary-care-based screening
programme for type 2 diabetes,
generating valuable information for
healthcare planners.
Studies at the Manchester CRF have
dramatically reduced complications
arising from surgery on abdominal aortic
aneurysms. Jane Eddleston’s studies
showed that exercise testing of patients
– who often have other cardiovascular
conditions – could be used to identify
those most at risk.
References for this article can be found at
www.wellcome.ac.uk/annualreview.
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1 Health records contain a wealth of information that
could be used in research.
2 Tobacco smoke has serious harmful effects.