Mind the Gap Methods: Steps to making Participatory Action Analysis with Citizen Collaborators Work

Background, aims and objectives: Participants in health research want to be involved in the research. Researchers struggle with how to approach citizens as co-researchers, train them, tactfully reduce contributions that are less useful and what to do about compensation and where to include citizen input in a manuscript. The aim of this study was to use participatory action research to prioritize the research question and to explore projected solutions as citizens and researchers with equal voices in research. In the first section of this paper we provide an introductory explanation of Participatory Action. In the second section we discuss our findings. Methods: The research explored the strengths, weaknesses, opportunities and threats in clinical trials as represented through online communications. In this follow-up analysis we share learning points for successful research involvement. Researchers and citizens worked in a participatory research framework. They searched the Internet using key words to locate social media conversations and Internet interviews about clinical trials over 4 months until a saturation point was reached. Data were de-identified and coded into a SWOT analysis and further coded into themes and analyzed. The findings and solutions were discussed using a circle chart for problem solving. The data were prioritized by consensus and the process is reported here. Results: Investigators and participant researchers were not conflicted in assigning themes because the data were clearly stated and the same sentiments were repeated consistently. The teams reached consensus about which quotes to include to support the findings. These themes ranged from supportive researcher-to-participant and participant-peer relationships to experiences of shame, research disparity, intimidation and personal loss. Conclusions: This research engages citizen participants as equal partners in all aspects of this study. Public and patient involvement as co-production in research can be used to identify and suggest resolutions in research. The use of participatory action in research can improve consistency, communication, innovation and quality in clinical trials.