From tokenism to empowerment: progressing patient and public involvement in healthcare improvement

Abstract

Background: There have been repeated calls to better involve patients and the public and to place them at the centre of healthcare. Serious clinical and service failings in the UK and internationally increase the urgency and importance of addressing this problem. Despite this supportive policy context, progress to achieve greater involvement is patchy and slow and often concentrated at the lowest levels of involvement.

Methods: A selective narrative literature search was guided by the authors' broad expertise, covering a range of disciplines across health and social care, policy and research. Published systematic literature reviews were used to identify relevant authors and publications. Google and hand searches of journal articles and reference lists and reports augmented identification of recent evidence.

Results: Patients and the wider public can be involved at most stages of healthcare, and this can have a number of benefits. Uncertainty persists about why and how to do involvement well and evaluate its impact, how to involve and support a diversity of individuals, and in ways that allow them to work in partnership to genuinely influence decision-making. This exposes patient and public involvement (PPI) to criticisms of exclusivity and tokenism.

Conclusions: Current models of PPI are too narrow, and few organisations mention empowerment or address equality and diversity in their involvement strategies. These aspects of involvement should receive greater attention, as well as the adoption of models and frameworks that enable power and decision-making to be shared more equitably with patients and the public in designing, planning and co-producing healthcare.

Keywords: Health policy; Healthcare quality improvement; Patient-centred care.

Figure 1

A multidimensional framework for patient and family engagement in health and healthcare. This figure builds upon Arnstein's widely quoted ‘ladder of citizen participation’. This described “a continuum of public participation in governance ranging from limited participation, or degrees of tokenism, to a state of collaborative partnership in which citizens share leadership or control decisions”. Reproduced with permission of Project HOPE/Health Affairs from Carman et al.