Development and evaluation of a collaborative model for Consumer Research Panels in Cancer Research Networks

Tony Stevens Alf OliverConsumer Liaison Lead ChairNational Cancer Research Network Humber and Yorkshire Coast Consumer Research Panel

INVOLVE Conference, East Midlands Conference Centre, 11 November 2004

IntroductionInvolvement 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 materialsLessons from the evaluationExamples of good practice

Humber & Yorkshire Coast Cancer Network

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 researchTo assess if establishing a Consumer Research Panel influences the involvement of consumers in cancer researchTo 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 completedExpressions of interest are being receivedA meeting will be held on 1 December 2004 to introduce the concept to interested parties1 to 1 interviews Finalising membership of the Consumer Research Panel

Humber & Yorkshire Coast Cancer Network

What happens next?

Active recruitmentConsumer Research Panel membership across the

community

The Consumer Research Panel will link with the existing Patient Involvement Groups in the Cancer NetworkA strategy will be produced to engage

research from the local communityA programme of training and mentorshipEvaluationChallenges and benefits

Further information Contacts:The Project: - Tony StevensConsumer 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 BrownResearch Programmes Manager, Patient and Public Involvement

Research Unit, Worthing & Southlands Hospitals NHS Trust, Worthing BN11 2DH

Tel: 01903 285076 vivienne,brown@wash.nhs.uk

School of Population and Health Sciences

Centre for Health Services Research

Involving people with dementia and their carers in research

Lynne Corner and John BondLynne Corner and John Bond

Centre for Health Services Research &Centre for Health Services Research &

Institute for Ageing and HealthInstitute for Ageing and Health

University of Newcastle upon TyneUniversity of Newcastle upon Tyne

Centre for Health Services Research University of Newcastle upon Tyne

Overview

• 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 12-week 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 researchManaging researchDesigning research instruments Undertaking researchAnalysing research Writing publicationsDisseminating 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

Researcher

• Kept in touch with realities of living with dementia

• Enjoyable

• Resource intensive

Panel members

• Anxiety at outset

• Opportunity to make a contribution

• Enjoyable

Centre for Health Services Research 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

• 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 BondCentre for Health Services ResearchUniversity of Newcastle21 Claremont PlaceNewcastle upon TyneNE2 4AAUK

E-mail: l.s.corner@ncl.ac.uk

Telephone: +44 (0) 191 222 7968