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From tokenism to empowerment: progressing patient and public involvement in healthcare improvement
  1. Josephine Ocloo1,
  2. Rachel Matthews2
  1. 1Department of Surgery and Cancer, Faculty of Medicine, Centre for Patient Safety and Service Quality, Imperial College London, London, UK
  2. 2National Institute for Health Research (NIHR) Collaboration for Leadership and Applied Health Research and Care (CLAHRC) for Northwest London, Imperial College London, London, UK
  1. Correspondence to Dr Josephine Ocloo, Centre for Patient Safety and Service Quality, Department of Surgery and Cancer, Faculty of Medicine, Imperial College London, St Mary's Campus, Room 504, 5th Floor, Norfolk Place, London W2 1PG, UK; j.ocloo{at}imperial.ac.uk

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.

  • Healthcare quality improvement
  • Health policy
  • Patient-centred care

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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