1. Development and evaluation of a collaborative model for Consumer Research Panels in Cancer Research Networks Tony Stevens Alf Oliver Consumer Liaison LeadChair National Cancer Research Network Humber and Yorkshire Coast Consumer Research Panel INVOLVE Conference, East Midlands Conference Centre, 11 November 2004

2. 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

3. 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

4. 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.

5. 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.

6. 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.

7. 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

8. 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.

9. 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.

10. 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

11. 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

12. 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

13. Humber & Yorkshire Coast Cancer Network Consumer Research Panel Alf Oliver Patient Representative

14. 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

15. 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

16. 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

17. 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

18. 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

20. School of Population and Health Sciences Centre for Health Services Research 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

21. 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

22. 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

23. 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

24. Centre for Health Services Research University of Newcastle upon Tyne Contacts with one couple over a 12- week period Activity Number of contacts Social contact3 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. 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

31. 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

32. 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