Reordering the machinery of participation with young people

Abstract

In this article, we reflect on our ongoing work that attempts to redistribute the agenda‐setting powers of researchers, research funders and the complex of private and public partnerships in the biomedical sciences. Despite calls for diversification, the current landscape is dominated by a traditional medical habitus that prioritises discovery science. This has moral and political consequences. Simultaneously, we have seen a slow rise in top–down infrastructures of public participation in medical science. While we are critical of the resulting machinery of participation, we believe in its premise that knowledge and expertise are everywhere. In our research project—called Utopia Now!—we have been seeking to involve young people in deciding the future of biomedical research. However, this project is itself premised on a number of our own complicities with the power held by universities and research infrastructures. Here, we explore three preliminary tactics through which we attempt to make these complicities politically productive, taking into account the limitations of working as early career researchers. We find that our mediation between young people and researchers across disciplines is not only integral for re‐politicising medical research, but also changes our understanding of knowledge production as a process of reordering, sorting and sharing.

Consumer partnerships in research (CPR) checklist: A method for conducting market research with vulnerable consumers

“…Given the nature of the men's subordinate status in the prison, a period of trust building occurred prior to the movement of the power relationship away from the researcher role to that of a facilitator and active contributor to the process. Likewise, to redistribute power to young people, Cowan et al (2022) used a utopian . Consumer partnerships in research (CPR) checklist: A method for conducting market research with vulnerable consumers.…”

“…Blurring the boundaries between the traditional understanding of the researcher and the researched can lead to more complex and less discrete ethical challenges (Cowan et al, 2022; Quinton & Reynolds, 2017). The ethical implications for researching vulnerable groups are multifaceted, with Schmidtke et al (2021) arguing ethical conduct in social scientific research extends beyond the study design to data analysis, and writing and may not be in line with formal university ethical procedures which focus on data collection.…”

“…Given the nature of the men’s subordinate status in the prison, a period of trust building occurred prior to the movement of the power relationship away from the researcher role to that of a facilitator and active contributor to the process. Likewise, to redistribute power to young people, Cowan et al (2022) used a utopian methodology that challenges modes of knowledge production. To reorganize power within the research process, the team used creative participatory methods including drama, film, computer games and fiction writing.…”

“…In addition to this ethical issue, the complexity of intersectionalities of vulnerability is exacerbated when researchers are unfamiliar with the lives of these groups (Willmott et al, 2022b), and a majority of vulnerable consumer research is conducted by able-bodied, usually Caucasian researchers who have received similar research training (Goopy & Kassan, 2019). For instance, Cowan et al (2022) examines the problematic nature of highly educated scientists who have a particular and partial view of the world and are charged with constructing dominant knowledge. The authors argue this process results in “knowledge that recreates, for example, gender-, race-and disability-related inequalities by defining which diagnoses and treatments are applicable to which constructed categories of people” (p. 2).…”

Complicity: Methodologies of power, politics and the ethics of knowledge production

“…Three of these papers examine the use of participatory methods within the organisational context of British universities. Indeed, Cowan et al (2022) are explicitly concerned with the institutionalisation of participant engagement-what they term the 'PPI-Industrial Complex' (Patient and Public Engagement, p. 92)-and note significant challenges and potential complicities of working within this vast machine. Ultimately, though, the authors are buoyant as to the possibility of 'reordering the machinery of participation' through the use of 'creative participatory methods-including drama, film, computer games and fiction writing…' (p. 94).…”