Builder, Expert, Disruptor, Leader: The Many Roles of People with Lived Experience

Robin Miller*, Nieves Ehrenberg, Caroline Jackson, Heather Penwarden, Viktoria Stein, Wilma van der Vlegel-Brouwer, Anne Wojtak

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

People with lived experience of health and social care, including family carers, should be at the heart of integrated care policy and practice. One of the challenges to achieving such co-production is insufficient clarity and limited understanding of the different roles that people with lived experience are asked or choose to undertake. Following research and workshops, four roles have been identified – community builder, improvement expert, disruptor / advocate, and citizen leader. Recognising the distinct contribution and demands of these roles will enable appropriate support and development for people with lived experience and the professionals and managers with whom they collaborate.
Original languageEnglish
Article number12
Number of pages4
JournalInternational Journal of Integrated Care
Volume23
Issue number3
DOIs
Publication statusPublished - 23 Aug 2023

Bibliographical note

Acknowledgements:
The authors would like to thank all the people with lived experience, practitioners and researchers who participated so enthusiastically in the ICIC 2023 workshop on the many roles of people with lived experience.

RM & CJ also acknowledge the support of the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) West Midlands. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Keywords

  • co-production
  • lived experience
  • citizen leader

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