Background Although the potential value of patient involvement in clinical research has been recognized , involvement of patient representatives (PRs) in non-clinical research is uncommon.
Mapping beliefs of researchers and PRs about the potential value of patient involvement in basic research.
To document experiences of both patient representatives and researchers of a pilot project of PRs participating in basic research.
Methods The method of participatory action research has been used. This is a research approach that emphasizes both participation and action . In this case two working groups were involved. The coordinator participated in meetings of the working groups, made notes during these meetings about the nature and degree of participation, evaluated the meetings with the participants and kept a diary. At the start and at the end of the pilot 6 researchers of the working groups were interviewed by the coordinator. The findings of the interviews were categorized and summarized. During 6 months, 5 PRs were invited to attend once a month, in one of the working group meetings. In the first meeting expectations of both researchers and PRs were exchanged. In the following meetings one researcher presented a lay version summary of his/her work. There was room for PRs to ask questions.
Results Prior to the pilot, some researchers had doubts about the added value of PRs, others were more positive and even curious. All PRs were open minded about the pilot, although none of them had experience with involvement in basic research.
At the end of the pilot, researchers expressed positive statements, such as: “(very) nice, good initiative and interesting discussions.” Positive experiences included: exercise in explaining their work to lay persons; stimulation in developing a more holistic (helicopter) view of their research, and getting a better insight in problems in daily life that patients encounter.
The PRs experienced the atmosphere during meetings as open and pleasant; they felt that the degree of participation was limited, but worthwhile.
The coordinator observed that interaction between the researchers and PRs mainly consisted of asking questions for clarification. Besides, the coordinator observed after presentations exchanges between PRs and about research-related issues such as the availability of human tissues for research and conversations about personal experiences.
Critical comments were made about the difficulty in understanding the complex matter for PRs and the chosen method (researcher presents, PRs listened) that does not encourage interaction.
Conclusions There is a potential value of patient involvement in basic research. A first result is that junior researchers develop a more holistic view of their research subject.
An open atmosphere and low expectations may contribute to success. Continuation of this pilot with modifications, including more research groups and PRs, are needed to finds ways to increase patient involvement in basic research.
Hsiao B., Fraenkel L., Incorporating the patient's perspective in outcomes research. Wolters Kluwer Health 2017 Number 00, volume 29.
Disclosure of Interest None declared