Engaging Research Participants with Results: A Rights Informed Approach

Abstract IntroductionSharing findings with research participants is gaining attention as an ethical imperative for the research community. However, current discussions on this topic typically take a paternalistic approach to the issue, with the research team having the power to decide whether or not the sharing of results should be carried out and how this is done. In this paper we propose an alternative approach to engaging participants with the findings from the research to which they have contributed.MethodsThe ethnographic fieldwork for our study was carried out in multiple phases from August 2018 to January 2019 and again from August 2019 to December 2019 among two vulnerable communities in the south Indian state of Kerala. Engagement of research participants with findings was integrated into the research protocol and various strategies including forming partnerships with participants and identifying appropriate forms of dissemination among the different categories of participants were carried out during fieldwork. The format and mode of dissemination varied depending on the participant category and was tailored to ensure that each participant was able to engage actively with the findings as opposed to merely passively receiving the results from our study,ResultsPrevious research studies that had been undertaken among our participants had not shared research results with them and were interpreted by the communities that researchers were not interested in making any difference to their situation. Building reciprocal relationships in a way that minimised power disparities and tailoring outputs to forms that promoted active engagement were key factors that helped participants to engage with our results. Such engagement added value to our research by enabling us to jointly evolve the recommendations from our study.Conclusion Participants contribute to the success of research by providing information that is sought by researchers. Compared to the dominant bio-medical research ethics framework, a rights informed approach to sharing research results with participants acknowledges this and recognises their agency to engage with research findings. Such an approach is not only socially responsible and ethical, but also improves the impact and legitimacy of research among the participants and the larger population that they represent.