Evaluation of Consumer Research Panels in cancer research networks

1. Evaluation of Consumer Research Panels in cancer research networks Vivienne Brown, Phil Cotterell, John Sitzia Worthing and Southlands Hospitals NHS Trust Alison Richardson King’s College London Cancer network Consumer Research Panels

2. What are cancer network ‘Consumer Research Panels’? (CRPs) • Groups of people affected by cancer who work with cancer researchers to improve the relevance, quality or conduct of a research study • Work within cancer research networks – 33 in England – which aim to widen participation in randomised clinical research – with national ‘portfolio’ of studies • CRP in North Trent network since 2001 • In 2004, National Cancer Research Network and Macmillan Cancer Support set up 3 more CRPs, as ‘pilots’ for a possible national programme * Cancer network Consumer Research Panels

3. What was the ‘evaluation’? • Pilot project period was one year • Independent research team contracted to assess ‘influence’ of panels – on research and on researchers – to identify key learning points • Collected wide range of information at ‘baseline’ and at one year • Spoke to 116 people, including 38 ‘consumers’ Cancer network Consumer Research Panels

4. How did the CRPs work? • Network ‘user involvement facilitators’ led local development of groups in 3 selected networks • Groups of around 10 people, typically middle-aged, mostly women, almost all white British • One site chose a ‘Partnership Panel’ model • CRP role to “facilitate consumer involvement locally and regionally … at all stages of the research process and at all levels” Cancer network Consumer Research Panels

5. How did the CRPs work? • No managed process of involvement in research projects (either ‘network’ or ‘non-network’) • Involvement was random and opportunistic • Panels wanted to be proactive in terms of getting involved in research, but in fact they found they had to be responsive • They were not in a position to easily initiate engagement activities, and instead had to wait for researchers to approach the panel Cancer network Consumer Research Panels

6. What did CRPs do? • Getting established and organised • Reviewing and/or commenting on research protocols, patient information sheets, and other written study material. Cancer network Consumer Research Panels

7. Researchers’ comments “I sort of had come around to realising that actually it could be really useful … I presented what I wanted to get out of the focus groups and we had a discussion and came up with the questions for the focus groups, so that was really useful.” (Informant 41, researcher) “The panel read what I had written and made some very – well I was quite impressed actually, for lay people, the quality of the questions that came back. Then we met [two CRP members] and discussed it.” (Informant 42 researcher) Cancer network Consumer Research Panels

8. What did CRPs do? • Getting established and organised • Reviewing and/or commenting on research protocols, patient information sheets, and other written study material • Involvement in Steering Groups • Involvement was at ‘consultation’ level – no examples of collaborative or user-led research • Involvement was only in ‘local’ – not ‘national’ - research • No clear, managed process of involvement in research projects (either ‘network’ or ‘non-network’) – instead involvement was random Cancer network Consumer Research Panels

9. Key messages • At one year, the panels had become established and begun to link with researchers and to influence research. The model was beginning to work. Cancer network Consumer Research Panels

10. ‘Most significant achievement’ I think forming ourselves into a panel. Making ourselves a resource. I feel we're just now ... laying the foundations for a credible research facility. (Informants 32 and 35, CRP members) Certainly the group’s now gelled to a point where I think it feels it has both strength, expertise and authority. (Informant 23, CRP member) Cancer network Consumer Research Panels

11. Key messages • At one year, the panels had become established and begun to link with researchers and to influence research. The model was beginning to work. • Panels’ purpose and remit need to be clear and realistic. Members want clear explanation of their role and what is expected of them. Cancer network Consumer Research Panels

12. Clarity of role We were just floundering, absolutely floundering, and when we asked “What are we supposed to be doing? Where are we supposed to be going? How do we move forward?” we were receiving questions back: “What do you want to do? [What] do you see yourself doing? How do you see yourself?” And that wasn't helping us at all. (Informant 11, CRP member) Cancer network Consumer Research Panels

13. Key messages • At one year, the panels had become established and begun to link with researchers and to influence research. The model was beginning to work. • Panels’ purpose and remit need to be clear and realistic. Members want clear explanation of their role and what is expected of them. • Panels take time to become established and active. All involved must think long-term. Cancer network Consumer Research Panels

14. Key messages • Training and support needs to be substantial and ongoing. • CRP members had no easy routes into the research community. Making links with researchers requires planning. Cancer network Consumer Research Panels

15. Thank you To our own Consumer Advisory Group especially. To all those CRP members, researchers and NHS staff who were interviewed for the evaluation. To NCRN / Macmillan Cancer Support. Cancer network Consumer Research Panels