Caring Futures Institute, Flinders University. Adelaide, Australia.
Expert by Lived Experience, Adelaide, Australia; South Australian Health and Medical Research Institute. Adelaide, Australia.
Patient Educ Couns. 2025 Jan;130:108472. doi: 10.1016/j.pec.2024.108472. Epub 2024 Oct 19.
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.
Surveys to people with lived experience and to academic researchers who had conducted research together (via consultation, partnership or lived-experience-led).
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 %).
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.
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.
确定在健康和医疗保健背景下，作者将自身经验专长贡献给研究成果时，作者是否以及如何承认作者的生活经历，目前的实践和偏好是什么。
对有生活经验的人和共同进行过研究的学术研究人员（通过咨询、合作或生活经验主导）进行调查。
共纳入了 40 名学术研究人员和 36 名生活经验贡献者的回复。大多数受访者（n=23 名生活经验者，63.9%；n=28 名学术研究人员，70%）报告说，作者的生活经验应该得到公开认可。大约一半的人建议，附属关系应该突出作者的生活经验（n=24 名生活经验者，66.7%；n=19 名学术研究人员，47.5%）。当有生活经验的人共同撰写产出物时，他们的生活经验并不总是得到承认（n=13/20，65%生活经验者；n=17/32 学术研究人员，53.1%）。
大多数受访者报告说，一个人的生活经验应该在与健康相关的研究成果中得到认可，但在实践中并没有始终如此。
计划与健康相关的研究成果的团队应征求相关作者对其认可生活经验的首选做法和术语的意见。除非另有规定，否则我们建议在成果中承认相关作者的生活经验，并在附属关系中介绍生活经验。
