Development and evaluation of a
collaborative model for Consumer
Research Panels in Cancer
Research Networks
Tony Stevens
Alf Oliver
Consumer Liaison Lead
National Cancer Research Network
Chair
Humber and Yorkshire Coast Consumer Research Panel
INVOLVE Conference,
East Midlands Conference Centre, 11 November 2004
Introduction
Involvement of consumers in research
important priority
Increasing consumer involvement in the
national cancer research organisations:
National Cancer Research Institute (NCRI):
Clinical Studies Groups
National Translational Cancer Research Network (NTRAC):
Patients and Carers Programme
BUT within Cancer Research Networks,
consumer involvement in research initiatives
are variable and unco-ordinated
Some of the potential benefits of involving
consumers in research…
Involvement can help identify and prioritise issues
important to consumers
Can help to ensure that only research relevant to
the NHS is funded
Consumers can access marginalised and
excluded members of communities and assist with
recruitment
Ensures that the research examines and
measures things that are important to consumers
May aid dissemination and implementation of
results
Education on both sides
Background to the project
Joint project funded by Macmillan
Cancer Relief and the National Cancer
Research Network to assess whether
the establishment of Consumer
Research Panels will have any
influence on the ways that consumers
are involved in cancer research and if
this has any effect on the research that
is conducted.
What we want to do…
To collaborate with three Cancer Networks to
establish Consumer Research Panels (CRPs).
To develop a package of initiatives to foster
consumer involvement in research that can be
adapted and replicated in other Networks.
To develop and deliver programmes of ongoing
recruitment, training, support and ways of
working that are effective in each Cancer
Network.
To evaluate the influence of each Consumer
Research Panel.
What we want to achieve…
To provide a Panel of trained consumers
that the research community within the
local Cancer Research Networks can
collaborate with at all stages of the
research process – from setting priorities
to helping design and manage studies.
How were the three Networks selected?
levels of existing consumer activity
experience of the Macmillan Partnership
Facilitator
maturity of the Research Network
representation from each of the three
Macmillan Regions
existing links with local clinical and academic
researchers.
Central South Coast
Humber and Yorkshire Coast
Surrey, West Sussex and Hampshire
How will it work?
Local CRPs would link with the Service Network via
the Partnerships Project.
CRP membership include members of the Partnership
Groups plus other interested consumers.
Recruitment to the CRPs based on a broad approach
designed to maximise representativeness and
inclusion.
Target of 20 consumers in each CRP.
Strategy to engage research community.
Development of induction, training and mentoring
programmes.
Timescales
This initiative began in June 2004 and will
end in May 2006.
The first Consumer Research Panel was
established in August 2004, the second in
October 2004 and the third in December
2004.
Each Panel evaluated at baseline, and then
six and twelve months later.
Evaluation
This initiative will be independently evaluated.
The evaluation will be conducted by:
John Sitzia
Patient and Public Involvement Research Unit
R &D Dept
Worthing & Southlands Hospitals NHS Trust
What will the evaluation team look at?
Benefits/challenges of integration with service
development initiatives
Relationships between consumers and
research community
Effect on patterns of research activity
Scope and remit of research activity
Impact and effectiveness of increased
involvement
Overview of consumer involvement in all
Cancer Research Networks
Can consumers in other Networks
benefit from this initiative?
There will be ongoing feedback to the other 31
Networks, who will be encouraged to develop
their own Consumer Research Panels.
Any resources that are developed will be placed on
the web for other Networks to access. These
resources will include:
Planning and administrative guidance
Training and induction materials
Lessons from the evaluation
Examples of good practice
Consumer Research Panel
Alf Oliver
Patient Representative
Humber & Yorkshire Coast Cancer Network
Aims and objectives
To promote consumer involvement in all
stages of the research and development
process in order to improve the quality of
research
To assess if establishing a Consumer
Research Panel influences the
involvement of consumers in cancer
research
To see whether this affects the local and
national portfolio
Humber & Yorkshire Coast Cancer Network
The dream!
Identify and prioritise all issues of
importance to consumers
Ensure knowledge of research is relevant
to the NHS
Access marginalised and excluded
members of the community
Humber & Yorkshire Coast Cancer Network
What is happening now?
Publicity completed
Expressions of interest are being
received
A meeting will be held on 1 December
2004 to introduce the concept to
interested parties
1 to 1 interviews
Finalising membership of the Consumer
Research Panel
Humber & Yorkshire Coast Cancer Network
What happens next?
Active recruitment
Consumer Research Panel membership across
the community
The Consumer Research Panel will link
with the existing Patient Involvement
Groups in the Cancer Network
A strategy will be produced to engage
research from the local community
A programme of training and mentorship
Evaluation
Challenges and benefits
Humber & Yorkshire Coast Cancer Network
Further information
Contacts:
The Project: - Tony Stevens
Consumer Liaison Lead, National Cancer Research Network,
Arthington House, Cookridge Hospital, Leeds LS16 6QB
Tel: 0113 392 7570 t.stevens@ncrn.org.uk
The Evaluation - Vivienne Brown
Research Programmes Manager, Patient and Public Involvement
Research Unit, Worthing & Southlands Hospitals NHS Trust,
Worthing BN11 2DH
Tel: 01903 285076
vivienne,brown@wash.nhs.uk
Involving people with dementia
and their carers in research
Lynne Corner and John Bond
Centre for Health Services Research &
Institute for Ageing and Health
University of Newcastle upon Tyne
School of Population and Health Sciences
Centre for Health Services Research
Overview
•
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User panel
Evaluation of user panel
Factors contributing to success
Issues in user involvement
Centre for Health Services Research
University of Newcastle upon Tyne
Purpose of user involvement
• To ensure focus remained on the
priorities of older people with
dementia and their carers
• To advise on practical aspects of the
research process
Centre for Health Services Research
University of Newcastle upon Tyne
Membership and features of the panel
• 3 people with dementia
• 2 carers of people with dementia
• (2 married couples)
• Met as individuals or dyads
• 3 monthly review of membership
Centre for Health Services Research
University of Newcastle upon Tyne
Contacts with one couple over a 12week period
Activity
Number of contacts
Social contact
3
Arranging or confirming visit
6
Reviewing consent
2
Discussion of topic guide
6
Information on project progress
3
Posting or delivering documents
3
Discussing communication techniques
2
Centre for Health Services Research
University of Newcastle upon Tyne
Level of involvement
• Consultation - users asked about their
views and this information contributes to
decision-making
• Collaboration – ongoing partnership
where users guide the project throughout
• User control – users design, undertake
and disseminate the results or
commission research into a particular
topic
Centre for Health Services Research
University of Newcastle upon Tyne
Involvement in different stages of
research
Prioritising research areas 
Planning research
Managing research
Designing research instruments 
Undertaking research
Analysing research 
Writing publications
Disseminating research

Implementing action
Centre for Health Services Research
University of Newcastle upon Tyne
Degree of influence
• Individual or group meetings
• Able to cancel and reschedule
meetings
• Able to decline to contribute to tasks
• Consent renegotiated regularly
Centre for Health Services Research
University of Newcastle upon Tyne
Outcomes for panel members and the
researcher
Panel members
Researcher
• Anxiety at outset
• Kept in touch with
realities of living
with dementia
• Opportunity to make
a contribution
• Enjoyable
Centre for Health Services Research
• Enjoyable
• Resource
intensive
University of Newcastle upon Tyne
Outcomes for research
• Helped researcher to find meaningful
and appropriate ways to ask questions
• Ensured focus on relevant topics
• Process enabled panel members to
develop expertise to review QoL
measures
Centre for Health Services Research
University of Newcastle upon Tyne
Factors contributing to success
• Seen as legitimate activity by funding body
• Boundaries to involvement made explicit from the
outset
• Flexibility over process
• Building rapport and confidence
• Involvement of married couples
• Personality of researcher
Centre for Health Services Research
University of Newcastle upon Tyne
Issues in involving people with
dementia
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Payment for involvement
Involving users in short projects
Managing anxiety at the outset
Enabling participants to contribute
Challenging our own assumptions
about:
– the areas in which involvement is
appropriate
– who is able to be involved
Centre for Health Services Research
University of Newcastle upon Tyne
Contact details
Dr Lynne Corner & Professor John Bond
Centre for Health Services Research
University of Newcastle
21 Claremont Place
Newcastle upon Tyne
NE2 4AA
UK
E-mail: l.s.corner@ncl.ac.uk
Telephone: +44 (0) 191 222 7968
Centre for Health Services Research
University of Newcastle upon Tyne