title: Mind the gap in clinical trials: A participatory action analysis with citizen collaborators.
abstract: What are the strengths, gaps, expectations, and barriers to research engagement in clinical trials as communicated through social media? Clinical trials test treatments to provide reliable information for safety and effectiveness. Trials are building blocks in which what is learned in earlier research can be used to improve treatments, compare alternatives, and improve quality of life. For 20 years, the percentages of clinical trials volunteers have decreased whereas the costs of running clinical trials have multiplied. Participants enroll in trials to access latest treatments, to help others, and to advance science, but there is growing unrest. The priorities of those running the trials differ from those of the participants, and the roles for public research involvement lack clarity. Changes to bridge these gaps in the research culture are proposed through the use of participatory action research (PAR) in which stakeholders collaborate to improve research methodology, galvanize citizen participation, multiply health knowledge, problem-solve barriers to access, and explore the value of research volunteers as collaborators. PAR enabled the inclusion of citizens as full collaborators. Social media data were gathered for 120 days until saturation was reached. De-identified data were organized into a Strengths Weaknesses, Opportunities and Threats framework and coded into themes for analysis. After the analysis, the authors prioritized potential solutions for improving research engagement. Strengths and opportunities remained constant through trial phases, disease burdens, and interventions. Threats included alienation, litigation, disparity, and shaming. Poor management and barriers to inclusion were identified as weaknesses. Opportunities included improving resource management and information quality. Barriers were minimized when relationships between staff and participants were inclusive, respectful, tolerant, and open to change. Participants' communications ranged from fulfillment through trial involvement to disparities and rights violations. PAR provides a safe space without power imbalances in which researchers and citizen worked as equals rather than as researchers and objects of research.
authors.affiliation: Department of Primary Health Care Sciences, University of Oxford, UK.
authors.forename: Amy
authors.initials: A
authors.lastname: Price
authors.affiliation: Department of Primary Care Medicine, J, University of Malaya, Kuala Lumpur, Malaysia.
authors.forename: Su May
authors.initials: SM
authors.lastname: Liew
authors.affiliation: Empower 2 Go, London, UK.
authors.forename: Jo
authors.initials: J
authors.lastname: Kirkpatrick
authors.affiliation: Empower 2 Go, London, UK.
authors.forename: Jazmin
authors.initials: J
authors.lastname: Price
authors.affiliation: Empower 2 Go, London, UK.
authors.forename: Taylor
authors.initials: T
authors.lastname: Lopreto
authors.affiliation: Empower 2 Go, London, UK.
authors.forename: Yasmin
authors.initials: Y
authors.lastname: Nelken
mesh_terms: D002986:Clinical Trials as Topic / Q000458:organization & administration*; D055812:Community-Based Participatory Research / Q000458:organization & administration*; D003299:Cooperative Behavior; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D012107:Research Design; D012108:Research Personnel; D035842:Research Subjects; D061108:Social Media / Q000706:statistics & numerical data*
keywords: citizen research impact; participatory action research; patient experience; research involvement; research methods; thematic analysis