Evidence Library

Title: From tokenism to empowerment: progressing patient and public involvement in healthcare improvement.
Author: Josephine Ocloo, Rachel Matthews.
Date Published: 2016
Reference: BMJ Quality and Safety ;25:626-632.
Are service users or carers authors: No/Not Known

Abstract: There have been repeated calls to better involve patients and the public and to place them at the centre of healthcare. Despite this supportive policy context, progress to achieve greater involvement is patchy and slow and often concentrated at the lowest levels of involvement. The authors carried out a selective literature search guided by their broad expertise, covering a range of disciplines across health and social care, policy and research. They found that 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, how to evaluate its impact, how to involve and support a diversity of individuals in ways that allow them to genuinely influence decision-making. This exposes patient and public involvement (PPI) to criticisms of exclusivity and tokenism. 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 approaches that enable power and decision-making to be shared more equitably with patients and the public in designing, planning and co-producing healthcare.

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Categories: nature and extent of public involvement in research
reflecting on public involvement in research
journal article

Date Entered: 2019/01/18

Date Edited: 2019/01/18

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