Russell Jill, Fudge Nina, Greenhalgh Trish
Institute of Population Health Sciences, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, UK.
Primary Care Health Sciences, University of Oxford, Oxford, UK.
Res Involv Engagem. 2020 Oct 27;6:63. doi: 10.1186/s40900-020-00239-w. eCollection 2020.
As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to assess the impact of public involvement, and a growing body of studies attempting to do just this, a number of questions have been largely ignored. This commentary addresses these omissions: What is the impact of all this focus on measuring impact? How is the language of impact shaping the debate about, and the practice of, public involvement in health research? And how have shifting conceptualisations of public involvement in health research shaped, and been shaped by, the way we think about and measure impact? We argue that the focus on impact risks distorting how public involvement in health research is conceptualised and practised, blinding us to possible negative impacts. We call for a critical research agenda for public involvement that [a] considers public involvement not as an instrumental intervention but a social practice of dialogue and learning between researchers and the public; [b] explores how power relations play out in the context of public involvement in health research, what empowerment means and whose interests are served by it, and [c] asks questions about possible harms as well as benefits of public involvement, and whether the language of impact is helpful or not.
随着公众参与健康研究的设计、实施和传播已成为一种预期规范并在政策中得到牢固确立,衡量其影响的兴趣也在增加。尽管有评估公众参与影响的动力,并且越来越多的研究试图做到这一点,但一些问题在很大程度上被忽视了。本评论文章解决了这些遗漏问题:所有这些对衡量影响的关注会产生什么影响?影响的语言如何塑造关于公众参与健康研究的辩论以及其实践?健康研究中公众参与概念的转变如何塑造了我们思考和衡量影响的方式,以及又如何受到其影响?我们认为,对影响的关注可能会扭曲公众参与健康研究的概念化和实践方式,使我们对可能的负面影响视而不见。我们呼吁制定一个关于公众参与的批判性研究议程,该议程:[a] 不将公众参与视为一种工具性干预,而是将其视为研究人员与公众之间对话和学习的社会实践;[b] 探讨权力关系在公众参与健康研究的背景下如何发挥作用、赋权意味着什么以及谁的利益由此得到满足,以及 [c] 提出关于公众参与可能带来的危害和益处的问题,以及影响的语言是否有帮助。