97. Evidence submitted by the UK Clinical
Research Collaboration Patient and Public Involvement Project
Group (PPI 91)
1. Executive Summary
1.1 The UK Clinical Research Collaboration
(UKCRC) is a partnership of key organisations involved in shaping
the clinical research environment in the UK. All the UKCRC Partners
have their own approaches to patient and public involvement however
they have committed collectively to engage patients and the public
in the clinical research agenda. The objective is to work in partnership
with key stakeholders to embed patient and public involvement
clinical research activity.
1.2 The UKCRC is working to develop coordinated
solutions to some of the more challenging issues in patient and
public involvement in research. Rather than fragmented responses
and/or duplication of effort we are working to ensure that limited
resources are used effectively in pursuit of patient and public
benefit.
1.3 Building a rigorous evidence base to
underpin the future development of patient and public involvement
in the NHS, including research, is of vital importance. To improve
patient and public involvement in the NHS a more coordinated approach
to future research is required and both the UKCRC and the UK Clinical
Research Network (UKCRN) are committed to working on this agenda.
2. Introduction
2.1 The UK Clinical Research Collaboration
(UKCRC) was established in 2004 in the wake of the Report of the
Research for Patient Benefit Working Party [1] and to effect the
changes necessary to make the UK a world leader in clinical research
for the benefit of patients and the public. The strength of the
UKCRC is that it brings together key organisations (including
main funding bodies, academia, the NHS, regulatory bodies, industry
and patients) who work in partnership to tackle complex and long-standing
issues that cannot easily be addressed by individual organisations
alone.
2.2 In two years the UKCRC Partners have
developed effective new ways of working together, agreed a broad
joint agenda and undertaken an ambitious programme of work [2].
Working in partnership to develop coordinated solutions to shared
problems avoids fragmented responses and/or duplication of effort
and ensures that limited resources are used more effectively.
2.3 The UKCRC takes a dual approach to working
with patients and the public. It has established:
— A Public Awareness Task and Delivery
Group to develop ideas and lead projects around raising public
engagement with the value of clinical research and clinical trials.
Initiatives include producing publications for members of the
public and developing resources for teachers (http://www.ukcrc.org/patientsandpublic/publicawareness.aspx).
— A Patient and Public Involvement
Project Group to provide an arena for Partner organisations and
other stakeholders with an interest in patient and public involvement
in research to work on a shared agenda for action. The current
agenda developed by the Group is tackling some of the enduring
barriers to patient and public involvement in research (http://www.ukcrc.org/patientsandpublic/patientandpublicinvolvement/currentprojects.aspx).
In Respect of the Issues Raised by the Committee
3. What is the purpose of patient and public
involvement?
3.1 Patient and public involvement in the
NHS is an emerging field and clinical research is an area in which
patient and public involvement has been developing in the UK over
the past 15 years led initially by the HIV/AIDS community and
followed in other healthcare areas. With the establishment of
the UKCRC and the development of the UK Clinical Research Network
(www.ukcrn.org) further "topic specific" and more general
approaches are now being infused with patient involvement.
3.2 Many of the facilitators and barriers
that are key in either supporting or impeding the sustainable
development of patient and public involvement in research are
equally relevant to the field of patient and public involvement
in the NHS. Research is a core activity carried out by and in
the NHS contributing to the development of treatments, to the
delivery of NHS services and also to developing knowledge and
understanding of patient and public involvement [3].
3.3 There are many potential benefits to
involving patients and the public in clinical research [4-10].
A major purpose of patient and public involvement in research
is to add value to the research that is undertaken, which can
in turn lead to the implementation of improvements in treatments
and services that are made available to the public. This has also
been seen in other areas of work in the NHS [11].
4. What form of patient and public involvement
is desirable, practical and offers good value for money?
4.1 There is a growing body of literature
that describes models of patient and public involvement in research.
These are beginning to be drawn together [12] so that issues such
as desirability, practicality and value for money can begin to
be addressed. Guidance documents formulated around examples of
good practice are also becoming more common [13-14].
4.2 However this field has suffered from
a fragmented approach which has resulted in evidence often being
anecdotal in nature. A systematic review of evidence in this area
has not yet been undertaken. In order to improve patient and public
involvement in the NHS more research is required to understand
what does and what doesn't work. The work of the NHS Centre for
Involvement (http://www.nhscentreforinvolvement.nhs.uk) should
be a significant step forward. The UKCRC is contributing to work
in this field by collaborating with other organisations to develop
a more coordinated approach to identifying and building the evidence
base in research.
4.3 The UKCRN coordinates the work being
undertaken to develop and strengthen the NHS infrastructure for
the delivery of clinical research in the UK. UKCRN offers an important
opportunity to develop good practice and gain a better understanding
of public involvement in research. The six thematic research networks
(including cancer which has submitted a separate memorandum to
the Inquiry through the National Cancer Research Institute Consumer
Liaison Group) are at the heart of the patient and public involvement
element of this work.
4.4 An example of current work is that of
the UKCRN working closely with the National Institute for Health
Research to put in place IT systems which facilitate patient and
public involvement. Systems will allow one-to-one, one-to-group,
and many-to-many sharing of ideas, messages and key documents
on both a regular and ad hoc (project) basis. The system can bring
together involved patients and public with health researchers
and clinical triallists. The development project (COMMIT) is leading
to a pilot project with the National Cancer Research Institute
Consumer Liaison Group and the patient/public group involved with
one other themed network during first half of 2007 and more widespread
implementation is planned for later in 2007.
4.5 The processes and methods used to involve
patients and the public within the UKCRC structure will be reviewed
and activities evaluated to inform improvements in practice. This
can also provide future evidence about a range of issues including
value for money in patient and public involvement.
5. Conclusion
5.1 If the public are to become meaningfully
engaged in the key policy issues that confront the NHS then the
development of successful methods of patient and public involvement
will provide valuable opportunities for the NHS to engage with
patients and the public and gain a better understanding of issues
of interest and concern. Patient and public involvement is a relatively
new area of NHS interest and patient and public involvement in
research is an important element in its continued development.
Ultimately it requires greater focus and attention on the part
of us all to ensure that we maximise the full potential of patient
and public involvement in adding value to the NHS as it evolves.
Roger Wilson
Chair, UK Clinical Research Collaboration, Patient
& Public Involvement Project Group
10 January 2007
REFERENCES
[1] Department of Health (2004) Research for
Patient Benefit Working Party—Final Report, Department
of Health.
[2] UK Clinical Research Collaboration (2006)
UK Clinical Research collaboration Progress Report 2004-06,
UKCRC.
[3] Department of Health (Research and Development
Directorate) (2006) Best Research for Best Health: A new national
health research strategy, Department of Health.
[4] Entwistle VA, Renfrew JJ, Yearley S, Forester
J, Lamont T (1998) Lay perspectives: advantages for health research.
British Medical Journal, 316:463-466.
[5] Hanley B, Truesdale A, King A, Elbourne D,
Chalmers I. (2001) Involving consumers in designing, conducting,
and interpreting randomised controlled trials: questionnaire survey.
British Medical Journal, 322: 519-23.
[6] Boote J, Telford R, Cooper C (2002) Consumer
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[8] Telford R, Boote JD, Cooper CL. (2004) What
does it mean to involve consumers successfully in NHS research?
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[9] Caron-Flintermann F (2005) A new voice
in science. Patient participation in decision-making on biomedical
research. Amsterdam: Wohrmann Print Service.
[10] Barnard A, Carter M, Britten N, Purtell
R, Wyatt K, Elleis A (2005) The PC11 Report. An evaluation
of consumer involvement in the London Primary Care Studies Programme.
Exeter: Peninsula Medical School.
[11] Department of Health (2004) Patient and
public involvement in the NHS: The evidence for policy implementation:
Department of Health, The Stationery Office.
[12] For example, invoNET (http://www.invo.org.uk)
is a network of people working to build evidence, knowledge and
learning about public involvement in NHS, public health and social
care research. It is developing a library of references and documents
whose primary focus is a research analysis or reflective analysis
of public involvement in NHS, public health or social care research.
[13] Service User Research Group England (2005)
Guidance for Good Practice—Service User Involvement in
the UK Mental Health Research Network, UK MHRN.
[14] Hanley B, et al (2004) Involving the
public in NHS, public health and social care research: Briefing
notes for researchers (2nd Edition), INVOLVE.
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