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

Abstract

Internationally, system-wide changes to the structures and systems governing health care aim to improve outcomes for patients, quality of care and access to services. The introduction of top-down centrally driven solutions to governance of health care, at the same time as increasing policy emphasis on greater 'bottom up' patient and public involvement in all aspects of health care, has set up complex tensions for policy implementation and health care practice. This paper explores the interplay of these agendas in the context of changes in primary health care services provided by the National Health Service (NHS) in England.Specifically, it looks at an example of service user involvement in a study (the PEGI study) of professional response to changes in the governance and incentives in the care of people with long-term conditions. This qualitative study was conducted in three Primary Care Trust sites in England. Service users influenced and guided the study throughout. In-depth interviews with 56 health and social care professionals engaged in the development of local policies and the delivery of care for people with complex long-term illness drew on vignettes developed by 32 members from three Service User Reference Groups (SURG).Themes generated by the cross case analysis were validated through these SURG groups. The findings presented here focus on four themes about risk and comparison of professionals'/service users' perspectives of the issues: managing 2 risks/consistent support, the risks of letting go/feeling in control, professionalism/helping people to help themselves, and managing expectations/professionals losing out. 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 health care, that take account of service user perspectives and enable interaction with professional groups, could help to validate processes of quality assurance and provide motivation for continuous quality improvement. We offer a model for 'opening up' collaborative projects to evaluation and appraisal and a process for critical reflection of the interrelationships between the PEGI study context, researcher issues, methods/approach and outcomes/impact of service user involvement.Key words: Governance, incentives, long-term conditions, risk, service user involvement, patient participation, collaboration 3 What is known about this topic? Health care systems internationally have undergone major and rapid changes in governance structures with the aim of improving accountability, transparency and outcomes of care. At the same time there is growing policy emphasis on service user (patient, carer and public) involvement in all aspects of health care and research. These simultaneous policy agendas have led to complex tensions for policy implementation and health care practice, including how involvement can be successful and authentic i...

A qualitative follow-up study of diabetes patients’ appraisal of an integrated diabetes service in primary care

“…Although patients value continuity of care that is personalised and flexible (Ross et al . ), it is possible clinicians’ consultation routines focus on the technical aspects of diabetes care, and seem to overlook other important aspects of diabetes management.…”

“…For example, Furler et al (2008) reported that diabetes self-management is more than a technical task, because it also involves difficult social and emotional work. Although patients value continuity of care that is personalised and flexible (Ross et al 2014), it is possible clinicians' consultation routines focus on the technical aspects of diabetes care, and seem to overlook other important aspects of diabetes management.…”

“…This can depend on how well the service innovation aligns with their personal challenges and understanding of self-management, as Ong et al (2014) suggest. Patients with long-term conditions value quality and respect when interacting with health professionals, and access to continuity of care that is individualised, flexible and responsive to their needs (Ross et al 2014). Health professionals can instead unwittingly prioritise what patients perceive to be less useful to their ongoing self-care (Sadler et al 2014).…”

Research with and about user participation: potentials and challenges

“…Involving users in data collection has both positive and negative impacts, both for those involved and for the results. In the role as data collector, a user can contribute to greater openness in terms of the experiences of the people interviewed and pave the way for a deeper dialogue, producing richer or deeper level data [ 2 , 4 ]. There are challenges as well, not least of an ethical nature, when people with similar experiences meet in the roles of interviewer and interviewee in a research project.…”

“…With user participation in research, this view of knowledge is problematized and questioned. Users are seen as representatives of various groups and as experts on their situations and conditions [ 2 ]. It is necessary, therefore, to take into consideration the experience and wishes of patients and relatives as well as the relevance and benefit to the field of various activities.…”