What “Coproduction” in Participatory Research Means From Participants’ Perspectives: A Collaborative Autoethnographic Inquiry

Abstract

In participatory health research, people with lived experience of illness participate as co-researchers in the co-production of knowledge along with academic researchers. A central idea is to democratize knowledge production by creating space for co-researchers’ experiential, embodied knowledge. The participatory research literature includes reflexive analyses exploring the complexities of co-production in participatory research. However, despite the democratic ideals, these analyses are almost always written by academic researchers alone. In this article, two co-researchers with lived experience of Parkinson’s disease and an academic researcher carry out a collaborative autoethnographic inquiry into what “co-production” in participatory research means for participants from their own perspectives. In so doing, the article presents and illustrates a distinctive format for collaborative autoethnography as a participatory method that enables co-researchers and academic researchers to investigate, write, and publish about co-production together through dialogue across personal narratives. It also presents the specific insider insights the inquiry generated into what co-production means for participants.

Participatory Research Emergent Recommendations for Researchers and Academic Institutions: A Rapid Scoping Review

“…There is growing evidence of the importance and value of respectful, inclusive, and collaborative participatory approaches across different disciplines (e.g., Bonello et al, 2022;Fletcher-Watson et al, 2019;Marzi, 2021;Vaughn & Jacquez, 2020;Zimmerman et al, 2019), as well as increasing recognition of the potential reach and relevance of meaningfully co-produced knowledge (Balazs & Morello-Frosch, 2013;Phillips et al, 2022;Rix et al, 2022;Vaccaro, 2020). There is a recognition that many types of research can benefit from engagement with, or leadership from, those with lived experience of the issues in focus (Marrone et al, 2022;Viswanathan et al, 2004;Wallerstein et al, 2020;Wallerstein & Duran, 2010).…”

“…We wish to highlight the continuous dialogue and self-reflexivity (Duea et al, 2022) necessary to enable researchers to navigate both ethics in practice (Guillemin & Gillam, 2004;Lenette et al, 2019;Spiel et al, 2020) and impactin-process (Marzi & Pain, 2022). Moment-to-moment micro-decisions can: affect present and future interactions between both individuals and community partners (Wali et al, 2021); catalyze, impede, or exclude the participation of different individuals (Phillips et al, 2022); and have a huge bearing on the outcomes and impacts of the research (Derrick et al, 2018;Marzi & Pain, 2022). A helpful description of ethics in practice is explained by Lenette and colleagues (2019): "Frequently, we are navigating shifting -and competing -opportunities, risks and agendas, with ramifications both for the research and for collaborators" (p.166).…”

“…A helpful description of ethics in practice is explained by Lenette and colleagues (2019): "Frequently, we are navigating shifting -and competing -opportunities, risks and agendas, with ramifications both for the research and for collaborators" (p.166). Their important and honest account emphasizes that navigating these shifts can be both physically and emotionally draining and risky (especially where their own values or identities intersect with the research focus; see also Caldera et al, 2020;Phillips et al, 2022).…”

“…We draw attention to recent valuable work on how to address racism in real-time, whether in interviews (Gast et al, 2022), or when raised in discussion leveraging creative and visual approaches (Moses, 2022). We also highlight the importance of research that is explicit about the diverse expertise and experience different individuals offer, and the importance of guidance on developing research that is respectful of difference and reflects this respect in all elements of the process, from language choice and accessible co-design through dissemination practices and authorship decisions (e.g., Bonello et al, 2022;Fletcher-Watson et al, 2019;Phillips et al, 2022).…”

Recruiting and retaining community researchers for a historical research project

“…This methodology was chosen as particularly appropriate for a grass-roots organisation such as SPAN, which led on a number of participatory research projects aimed at centring the experience of single parents in their campaigns, but which also offered personal development to participants. Our approach involved recognising 'co-production' as a relational practice that was about both research, and social and practice changes (Phillips et al, 2022;Groot et al, 2019).…”