Transforming Clients into Experts-By-Experience: Health Risk Governance and Client Participation in Dutch Long Term Care.

To deepen their insights into the risks and uncertainties of long term care delivery, and under pressure of societal debate, the Dutch Health Care Inspectorate (IGZ) experiments with the use of experiential knowledge in the regulation of care for the elderly. As experts-by-experience, clients are thought to give additional information for, and legitimacy to, the IGZ’s work. Empirically, this paper tracks an IGZ pilot project with experts-by-experience through a mixed-method qualitative inquiry that involves the ethnographic observation of the pilot project-team, site-visits, and repeated interviews. Theoretically, we argue for the need for an interpretive and dialectical approach to understanding health risk governance. We examine the dynamic feedback loops between institutionalized and individualized risks, by showing how the project transforms selected clients into experts-by-experience through training and site visits as ‘mediator’ of the client-perspective, ‘source of data’ in themselves, and as 'ambassador' of the IGZ. In this transformation clients struggle, and fail, to bring to the fore their own definitions of quality and safety. This happens in part because of the project-team’s felt need to ensure a safeguard from institutional risks. Paradoxically, in their attempt to open-up valid new perspectives on the risks of long term care delivery, the project ‘makes-up’ (Hacking) the experts-by-experience in such a fashion that these perspectives are least likely to emerge. Concurrently, we find how in their attempt to produce valid (objective, rational) knowledge experts-by-experience devalue their own experiential knowledge. These findings underscore the dialectics of health risk governance. We show how dominating, legitimate, interpretations of health and risk resonate in experimental institutional practices that try to move beyond them, and how both regulators and clients face risks in taking experiential knowledge on risk and uncertainty on board.