Send message to Authors

Paper short abstract

This study presents a case of infrastructuring patient involvement in medical ethics review. Out of concern for complementary and retrenching effects, we aim to understand how questions about patient involvement in review application forms can be employed for transformation.

Paper long abstract

In health research systems in the Netherlands, we have seen an expansion of infrastructure for patient involvement over the past two decades. Based on both moral and epistemic grounds, the idea that good research requires the involvement of patients seems to be gradually welcomed in medical, scientific, and regulatory institutions. While some believe patient involvement can transform research systems to become more democratic and needs-oriented, there is also a risk that it merely complements established routines or even retrenches epistemic and political hierarchies. Using the notion of Star & Bowker (2002), we dive into a particular case of infrastructuring patient involvement: Embedding patient-involvement questions as part of the assessment and registration form of new proposals into the routines of medical ethics review in the Netherlands. Out of concern for complementary and retrenching effects, we aim to understand how to this infrastructure can be employed for transformation of review and research practices. We draw on participatory ethnographic data, collected during fieldwork at the national office of the Dutch Central Committee for Research Involving Human Subjects (CCMO) by taking part in their Patient Involvement Program. While actors broadly attach value to the abstract notion of patient involvement in medical-scientific research, they reconcile their own goals and practices with the materiality of the questions in the form, constrained by the systemic structures that bound their agency. Unpacking practices, rationales, and (anticipated) effects of the patient involvement questions, we delineate distinct repertoires of employment, which complement, retrench, or transform ethical review routines.