TY - JOUR
T1 - Credit where it's due
T2 - Recognising lived experience in research authorship
AU - Lynch, Elizabeth
AU - Earle-Bandaralage, Lana
AU - Eley, Sarah
AU - Gancia, Agustina
AU - Larcombe, Stacy
AU - Muthuralingam, Shyamsundar
AU - Townsin, Louise
AU - Wardill, Hannah
AU - Corsini, Nadia
N1 - Publisher Copyright:
© 2024 The Authors
PY - 2025/1
Y1 - 2025/1
N2 - 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.
AB - 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.
KW - Affiliations
KW - Authorship
KW - Co-design
KW - Consumer engagement
KW - Patient public involvement
UR - http://www.scopus.com/inward/record.url?scp=85206889623&partnerID=8YFLogxK
U2 - 10.1016/j.pec.2024.108472
DO - 10.1016/j.pec.2024.108472
M3 - Article
AN - SCOPUS:85206889623
SN - 0738-3991
VL - 130
JO - Patient Education and Counseling
JF - Patient Education and Counseling
M1 - 108472
ER -