From tokenism to empowerment: progressing patient and public involvement in healthcare improvement
Top Cited Papers
Open Access
- 18 March 2016
- journal article
- review article
- Published by BMJ in BMJ Quality & Safety
- Vol. 25 (8), 626-632
- https://doi.org/10.1136/bmjqs-2015-004839
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
This publication has 34 references indexed in Scilit:
- Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist worldHealth Expectations, 2009
- The challenge of quality and patient safetyJournal of the Royal Society of Medicine, 2008
- Effectiveness of strategies for informing, educating, and involving patientsBMJ, 2007
- Should patients have a role in patient safety? A safety engineering viewQuality and Safety in Health Care, 2007
- Writing narrative literature reviews for peer-reviewed journals: secrets of the tradeJournal of Chiropractic Medicine, 2006
- Access to health care for ethnic minority populationsPublished by Oxford University Press (OUP) ,2005
- Social movements in health: an introductionSociology of Health & Illness, 2004
- Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in LondonSocial Science & Medicine, 2004
- DISCUSSION PAPER: Public trust and accountability for clinical performance: lessons from the national press reportage of the Bristol hearingJournal of Evaluation in Clinical Practice, 1999
- 'Pulling down churches': accounting for the British Mental Health Users' Movement.Sociology of Health & Illness, 1991