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  1. Price A, Liew SM, Kirkpatrick J, Price J, Lopreto T, Nelken Y
    J Eval Clin Pract, 2017 Feb;23(1):178-184.
    PMID: 27917564 DOI: 10.1111/jep.12678
    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.
    Matched MeSH terms: Community-Based Participatory Research/organization & administration*
  2. Rhule ELM, Allotey PA
    Infect Dis Poverty, 2020 Jan 13;9(1):3.
    PMID: 31931879 DOI: 10.1186/s40249-019-0616-7
    BACKGROUND: Social Innovation in health initiatives have the potential to address unmet community health needs. For sustainable change to occur, we need to understand how and why a given intervention is effective. Bringing together communities, innovators, researchers, and policy makers is a powerful way to address this knowledge gap but differing priorities and epistemological backgrounds can make collaboration challenging.

    MAIN TEXT: To overcome these barriers, stakeholders will need to design policies and work in ways that provide an enabling environment for innovative products and services. Inherently about people, the incorporation of community engagement approaches is necessary for both the development of social innovations and accompanying research methodologies. Whilst the 'appropriate' level of participation is linked to intended outcomes, researchers have a role to play in better understanding how to harness the power of community engagement and to ensure that community perspectives form part of the evidence base that informs policy and practice.

    CONCLUSIONS: To effectively operate at the intersection between policy, social innovation, and research, all collaborators need to enter the process with the mindset of learners, rather than experts. Methods - quantitative and qualitative - must be selected according to research questions. The fields of implementation research, community-based participatory research, and realist research, amongst others, have much to offer. So do other sectors, notably education and business. In all this, researchers must assume the mantel of responsibility for research and not transfer the onus to communities under the guise of participation. By leveraging the expertise and knowledge of different ecosystem actors, we can design responsive health systems that integrate innovative approaches in ways that are greater than the sum of their parts.

    Matched MeSH terms: Community-Based Participatory Research/organization & administration*
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