The impossibility of engaged research: Complicity and accountability between researchers, 'publics' and institutions.

Over the past decade, U.K. universities have increasingly sought to involve publics in research as active participants in the construction of academic knowledge. Sociologists of health have largely welcomed this enthusiasm for engaged and participatory ways of working, including methodologies long in use in the field such as patient-led research and co-creation. Despite the strong interest in engaged research, however, we argue that funding patterns, bureaucratic structures and an overreliance on people employed on casual contracts make it extremely difficult, often impossible, to do engaged research in British universities. Drawing on our own experiences, we show how our attempts to practise and deepen accountability to variously situated publics were constrained by the way our institution imagined and materially supported engagement. We argue that it falls to individual researchers to mitigate or work around structural barriers to engagement, and that this process creates dilemmas of complicity. If engaged research is to fulfil its remit for inclusion and its radical potential, researchers need to think carefully about how the U.K. engagement agenda entwines with processes of casualisation, acceleration and projectification, and how institutional recuperations of engagement can undermine its political and epistemic objectives.

A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.

BACKGROUND: New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). METHODS: We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. RESULTS: The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. CONCLUSIONS: The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of "big data" registries, including patient-reported data, for care, research, and quality improvement.