Disentangling patient and public involvement in healthcare decisions: why the difference matters

Mio Fredriksson*, Jonathan Q. Tritter

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal-type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences.

Original languageEnglish
Pages (from-to)95–111
Number of pages12
JournalSociology of health and illness
Volume39
Issue number1
Early online date11 Nov 2016
DOIs
Publication statusPublished - 9 Jan 2017

Bibliographical note

This is the peer reviewed version of the following article: Fredriksson, M., & Tritter, J. Q. (2016). Disentangling patient and public involvement in healthcare decisions: why the difference matters. Sociology of health and illness (39)11, 95-111, which has been published in final form at 10.1111/1467-9566.12483. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving

Keywords

  • accountability
  • citizen participation
  • legitimacy
  • patient and public involvement
  • patient empowerment
  • responsiveness

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