The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research

Abstract

Abstract What has been called the “participatory turn” in health and medicine refers to a general shift from paternalistic and hierarchical, to more collaborative and egalitarian relationships between medical experts and patients/research participants; a shift from what the pragmatic sociologists Boltanski and Thévenot (2006) call a “domestic” to a “civic” order of worth. Critical scholarship on the participatory turn tends to emphasize discrepancies between ideals of equality and empowerment, and practices of increased individual responsibility and disempowerment. In this paper, we depart from this critical literature by suspending evaluation about authentic and inauthentic ideals and practices. Instead, we explore the issues and challenges that arise in the process of ensuring that ideal and practice align in what we call a civic-participatory style of doing medical research. Drawing on interviews and observations carried out with medical researchers, coordinators and assessors in a longitudinal cohort study called the Personalized Parkinson’s Project (PPP), we show that for study staff it is often unclear how they can meet the demands of reciprocity towards research participants that are presupposed by civic-participatory ideals. In particular, in the context of a study whose aim is the creation of a comprehensive dataset comprised of clinical, environmental and lifestyle data that study participants generously “give” over a period of 2 years, we observed a persistent concern on the part of study staff regarding what and how to “give back”. As we show, study staff negotiate and resolve this tension through recourse to creative workarounds and innovative ways of giving back, including frequent project and scientific updates, newsletters, the designation of personal assessors and pampering Event Days. The paper makes a contribution to the critical literature on the participatory turn by showing the utility of the orders of worth framework in probing the challenges and workarounds that emerge in settings where an incumbent style of organizing medical research (here, the 'civic') comes to challenge practices hitherto organized according to a wholly different logic (in this case, the 'domestic')—without making assumptions about the (in)authenticity of such ideals and practices. Moreover, we contend that this framework offers new tools for evaluating participatory research projects in the form of “good” or “successful” civic–domestic compromises.