Learning from people with long-term conditions: new insights for governance in primary healthcare

The introduction of top-down centrally driven solutions to governance of healthcare, at the same time as increasing policy emphasis on greater 'bottom up' patient and public involvement in all aspects of healthcare, has set up complex tensions for policy implementation and healthcare practice. This paper explores the interplay of these agendas in the context of changes in primary healthcare services provided by the National Health Service in England. Specifically, it looks at service user involvement in a qualitative study of the professional response to changes in the governance and incentives in the care of people with long-term conditions. Service users influenced and guided the study at local and national levels. Vignettes of patient stories developed by service users informed in-depth interviews with 56 health and social care professionals engaged in the development of local policies and services for people with complex long-term illness, and themes generated by cross case analysis were validated through service users. The findings presented here focus on four themes about risk and comparison of professionals' and service users' perspectives of the issues: managing risks/consistent support, the risks of letting go/feeling in control, professional identity/helping people to help themselves, and managing expectations/professionals losing out. In this study, service user involvement added value by validating understandings of governance, framing debates to focus on what matters at the point of care and enabling perspective sharing and interaction. We suggest that more collaborative forms of governance in healthcare that take account of service user perspectives and enable interaction with professional groups could help validate processes of quality assurance and provide motivation for continuous quality improvement. We offer a model for 'opening up' collaborative projects to evaluation and critical reflection of the interrelationships between the context, methods and outcomes of service user involvement.