Participatory Research – what it’s really about #medx

“the key element of participatory research lies not in the methods but in the attitudes of researchers, which in turn determine how, by and for whom research is conceptualized” (Cornwall & Jewkes, 1995, p. 1667).

This week in the MedX course Patient Engagement Design, we are talking about participatory research – or at least that was the title for this week. Unfortunately, the presentation material had nothing to do with participatory research – asking open ended questions on surveys does not make the survey participatory! You see, just because you give the respondent an opportunity to provide their perspective in an open format, doesn’t mean you are involving them in the research. You are not allowing the participants to shape the research itself.

First, I shall suggest that if you are unfamiliar with participatory research in a health care context, I recommend that you read the following article. I’ve found it to be not too academic (I hope), and yet it provides some background into what participatory research is all about.

Cornwall, A., & Jewkes, R. (1995). What is participatory research? Social science & medicine, 41(12), 1667-1676. Retrieved from http://www.researchgate.net/publication/227422919_What_is_participatory_research/file/504635239498b047fa.pdf

 

“Participatory research is primarily differentiated from conventional research in the alignment of power within the research process.” (Cornwall & Jewkes, 1995, p. 1667, p.1668)

What was really missing from the video clip was the empowering of the participant to actually change the direction of the research itself. When I do design-based research (consultative), I work with practitioners to come up with a design that might work within their context. It is a partnership. In implementation research (collegiate), researchers work with all the players in the health care system to figure out how best to implement the medical innovation – the participants in the research directly impact the outcome of the research – their is a partnership between the researcher and the participants.

“A central thread which runs through these approaches is an emphasis on changing the role of the researcher from director to facilitator and catalyst.” (Cornwall & Jewkes, 1995, p. 1667, p. 1670)

What would participatory research look like for ‘patient engagement’? I had hoped to see examples of that within the course, but I did not. So, I’ll ask you, the readers of my blog, how would you envision participatory research surrounding patient engagement?

1 Comment

  1. I’d imagine collaborative autoethnography between patients and practitioners! If you’re researching patient engagement itself.
    If you’re applying patient engagement to do participatory medical research, I’d envision patient involvement in setting research agenda, and continuous involvement in how it’s run and data is analyzed (i have not read the article u link to yet, though)

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