Whose voices? Patient and public involvement in clinical commissioning

Abstract

AimThis paper aims to explore patient and public representation in a NHS clinical commissioning group and how this is experienced by staff and lay members involved.BackgroundPatient and public involvement is believed to foster greater public representativeness in the development and delivery of health care services. However, there is widespread debate about what representation is or what it should be. Questions arise about the different constructions of representation and the representativeness of patients and the public in decision‐making structures and processes.DesignEthnographic, two‐phase study involving twenty‐four observations across two types of clinical commissioning group meetings with patient and public involvement, fourteen follow‐up interviews with NHS staff and lay members, and a focus group with five lay members.ResultsPerceptions of what constitutes legitimate representativeness varied between respondents, ranging from representing an individual patient experience to reaching large numbers of people. Consistent with previous studies, there was a lack of clarity about the role of lay members in the work of the clinical commissioning group.ConclusionsUnlike previous studies, it was lay members, not staff, who raised concerns about their representativeness and legitimacy. Although the clinical commissioning group provides resources to support patient and public involvement, there continues to be a lack of clarity about roles and scope for impact. Lay members are still some way from constituting a powerful voice at the table.

Patient and public involvement facilitators: Could they be the key to the NHS quality improvement agenda?

“…Some themes which were identified resonated with established findings, such as the issue of 'unrepresentative' voices, 49,[55][56][57][58][59][60][61][62][63] as well as numerous other factors more specific to contexts, such as practical barriers to PPI. 15,27,31,55,[64][65][66][67][68][69][70][71][72][73][74][75] The novel findings were related specifically to the role of PPIFs and are the focus of this paper.…”

“…There was also evidence of tensions between individual stakeholders’ needs and the perceived collective needs of the organization. The issue of ensuring representativeness in PPI was highlighted as problematic by many professionals, including the PPIFs themselves, and is supported by wider literature . Interviewees were aware of the potential for laypeople to have their own agendas.…”

“…The issue of ensuring representativeness in PPI was highlighted as problematic by many professionals, including the PPIFs themselves, and is supported by wider literature. 49,51,[55][56][57][58][59][60][61][62][63] Interviewees were aware of the potential for laypeople to have their own agendas.…”

Variations in stakeholders' priorities and views on randomisation and funding decisions in out‐of‐hospital cardiac arrest: An exploratory study

“…The PPI group's view was influenced by their personal experience, and it is, therefore, unlikely that they fully represent the general population. The question of representativeness in PPI is a largely unresolved issue . Our view is that the PPI group in our study is limited in its representation of the general population, but it, nevertheless, represents a major stakeholder in OHCA.…”

“…Further increasing the level of care at increasing costs was perceived as unfair to other patients, in keeping with the principle of horizontal equity . Patient and public involvement is an increasingly important factor in both research and health care commissioning, and an understanding and awareness of the underlying value judgements of all stakeholders is crucial if these models of shared decision‐making are to prove successful …”