Influencing the Research Agenda Findings from an independent evaluation of a Cancer Network Consumer Research Panel Cindy Cooper, Julia Moore, Rosemary Telford, Jonathan Boote and Julie Repper. School of Health & Related Research, University of Sheffield.

Aims To explore the views and expectations of the Consumer Research Panel from the perspectives of the panel facilitators, the panel members and the Project Board To evaluate the extent to which these expectations were met in the first year of its establishment.

Methods Initial focus group held with panel members– Aug 2002 Initial interview with panel facilitators – Nov 2002 Interview with Project Board member – Dec 2002 Questionnaire to panel members – May 2003 Follow up interview with facilitator – August 2003 Follow up questionnaire to panel members – Sept Follow up focus group with panel members– Sept. 2003

Methods - analysis Qualitative data analysed using Framework approach. familiarization with the data, identifying a thematic framework, indexing and charting of the data using the thematic framework interpretation Data extracted from transcripts and aggregated under categories and theme Comparison between panel members, facilitators and commissioners. Questionnaires – analysis limited to frequencies (small numbers)

Results 11 out of the 13 panel members responded to the initial questionnaire 10 of 13 responded to follow up questionnaire Five overall themes emerged from the data analysis –Attitudes to consumer involvement and to the Consumer Research Panel –Expectations of the panel –Fears and concerns –Reflections on how far expectations had been met –Lessons learnt about the process of running the panel

Expectations Shared expectation –Involvement in all stages of the research process setting priorities undertaking research evaluating completed projects writing up and dissemination

quotes “to have input at all the stages”. »panel member, follow-up focus group “I’d come back to the NHS Consumers’ model where there is input at every stage of that process.” »Facilitators –initial interview

Expectations – setting the agenda Panel members –“To generate research projects of our own based on our own experience.” Facilitators –“actually to set the research priorities for agendas is important. What we think is an important area to research may not be necessarily important for the patient.”

Expectations- improve research Panel members hoped that, “[the panel] would contribute to research” the patient perspective would influence research. –“Remind everyone involved of consumer perspective – what we actually want, need, feel and not what everyone presumes on our behalf”

Expectations of panel members Panel members wanted improvements for patients and services “better communication between patient and profession” “better service to cancer patients” “hope that we can change matters” ”making a contribution hopefully for the good of consumers and patients”

Expectations of panel members Personal development –“ Gain a better understanding of research process” –“I wanted to understand better what academic research is about” Support – “I think it is a support group of sorts as well, because of similar experiences.” Personal interest and enjoyment –“Personal level of enjoyment”

Expectations of facilitators Benefiting patients –“That’s what we are interested in making better research so patients benefit.” Benefiting research –“The main outcome should be better research protocols. There’s no point in doing it otherwise – it’s a waste of time.”

Expectations of commissioners Board member:- “The process is to benefit the patients. Consumers on the panel will probably get their own sort of personal satisfaction out of it, and we as researchers will get practical advice but ultimately the aim must be to actually improve patient [services] and patient research.”

Outcome involvement in research Facilitator –“I think we did very well in getting people into projects quite quickly” »(facilitator, follow-up interview) –just less than half of the respondents (five of the eleven) were involved in research projects –Others were still interested –Some frustration that opportunities were not available –“If a list of research projects were published it would be good. We want to see the whole list not just the ones they think we might want to be involved with.” »panel member, follow-up focus group

Outcome –contribution to research Facilitator’s view panel made a significant contribution to research projects at a number of stages:- “We're interested in writing a paper together about how consumers have input in our project because they really have changed things..”

Outcome – Personal development Two-day training- an introduction to research general introduction qualitative and quantitative methodology, development of the research question, research ethics, patient recruitment, data analysis report writing and dissemination further training after end of evaluation

View of training Facilitators:- “The training days I think were very good. I think they worked well for the time and resources that we actually had.” Panel members:- “Those training days were really valuable, long and hard…it gave people a good insight then into what research was about and how it worked.”

Outcome – personal development Panel members gained a better understanding of research –"I understand the procedures and limitations better." –“Now I know so much more about research, aims, objectives, results, methodology,.“ »Questionnaire respondents

Outcomes – the experience “It is a supportive group in itself. They also make it a very enjoyable experience for us to be together.” “it’s also good fun and makes me feel valued, and whether that’s a good motivation I don’t know”

Outcome – influencing agenda members felt that they not been able to innovate new research based on their own experience:- “He said once the panel gets established and confident he hoped we would bring things to the table. You can’t run before you can walk.” “The emotional and spiritual needs of patients – I think this is the field that needs a lot of research and I wonder who in the academic world is generating those sorts of projects”

Outcome – influencing agenda The facilitator “I would certainly put in the training days…the fact that you have a great idea doesn’t necessarily mean that you are going to have a project.”

Summary Shared expectations of involvement in every stage of research process Shared expectations of benefit to research and patients More emphasis of panel members on the quality of the experience and personal development Panel member involvement in many stages Area of unmet expectation was innovating research based on own experience

Recommendations 1 Don’t underestimate importance of personal experience as motivation for involvement understand expectations review members’ expectations and motivations agree plan for involvement individually type of research stage of research level of involvement ‘reward’

Recommendations 2 Involvement in setting the research agenda Clarify expectations Training in practicalities – developing a protocol, obtaining funding Explore feasibility, resources and support Other ways e.g. commissioning groups

“I wanted things that users wanted to be researched for a change instead of what academics thought needed researching.”