Abstract
Objective: To identify current practice and preferences about whether and how to acknowledge authors’ lived experience when authors contribute their lived experience expertise to research outputs in the context of health and healthcare.
Methods: Surveys to people with lived experience and to academic researchers who had conducted research together (via consultation, partnership or lived-experience-led).
Results: Responses from 40 academic researchers and 36 lived experience contributors were included. Most respondents (n = 23 lived experience, 63.9 %; n = 28 academic, 70 %) reported an author's lived experience should be publicly recognised. Approximately half recommended that affiliations should highlight authors’ lived experiences (n = 24 lived experience, 66.7 %; n = 19 academic, 47.5 %). When people with lived experience had co-authored outputs, their lived experience was not always acknowledged (n = 13/20, 65 % lived experience; n = 17/32 academic, 53.1 %).
Conclusion: Most respondents reported that a person's lived experience should be recognised on health-related research outputs, but this did not consistently occur in practice.
Practice Implications: Teams planning health-related research outputs should seek input from relevant authors about their preferred practices and terms for recognising their lived experience. Unless preferred otherwise, we recommend that the lived experiences of relevant authors are acknowledged within the output and that lived experiences are presented in affiliations.
Original language | English |
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Article number | 108472 |
Number of pages | 4 |
Journal | Patient Education and Counseling |
Volume | 130 |
DOIs | |
Publication status | Published - Jan 2025 |
Keywords
- Affiliations
- Authorship
- Co-design
- Consumer engagement
- Patient public involvement