Washington University in St. Louis, Brown School, St. Louis, MO, USA.
Washington University in St. Louis School of Medicine, St. Louis, MO, USA.
Transl Behav Med. 2021 Mar 16;11(2):441-451. doi: 10.1093/tbm/ibaa042.
Engagement activities are defined along a continuum that analyzes and represents nonacademic stakeholder activities and interactions with academic researchers. Proposed continua begin with none to limited stakeholder inclusion and input into research and continue with descriptions of increasing presence, input, and participation in decision-making. Despite some agreement in the literature, development of consistent terminology and definitions has been recommended to promote the common understanding of strategies in engaged research. This paper sought to develop and understand classifications and definitions of community-engaged research that can serve as the foundation of a measure of engaged research that permits comparisons among engagement strategies and the outcomes that they produce in health- and healthcare-related research studies. Data on academic and stakeholder perceptions and understandings of classifications and definitions were obtained using Delphi process (N = 19) via online and face-to-face survey and cognitive response interviews (N = 16). Participants suggested the need for more nuanced understanding of engagement along portions of the continuum, with active involvement and decision-making as engagement progressed. Cognitive interview responses suggested that outreach and education is a more advanced level of engagement than previously discussed in the literature and viewed consultation negatively because it required work without guaranteeing community benefit. It is possible to define a continuum of patient- and community-engaged research that is understood and accepted by both academic researchers and community members. However, future research should revisit the understanding and depiction of the strategies that are to be used in measure development.
参与活动沿着一个连续体展开,该连续体分析并代表非学术利益相关者的活动以及与学术研究人员的互动。提出的连续体从对研究的利益相关者的参与和投入几乎为零或有限开始,然后描述利益相关者在决策中越来越多的存在、投入和参与。尽管文献中有一些共识,但已经建议制定一致的术语和定义,以促进对参与式研究策略的共同理解。本文旨在开发和理解社区参与研究的分类和定义,这些分类和定义可以作为衡量参与式研究的基础,从而能够比较各种参与策略及其在健康和医疗保健相关研究中的成果。使用德尔菲法(N=19)通过在线和面对面调查以及认知反应访谈(N=16)获取关于学术和利益相关者对分类和定义的看法和理解的数据。参与者建议需要更细致地理解连续体上的参与部分,随着参与的进展,积极参与和决策。认知访谈的回应表明,外联和教育是比文献中以前讨论的更高级别的参与,并且消极地看待咨询,因为它需要在没有保证社区受益的情况下工作。可以定义一个患者和社区参与研究的连续体,这个连续体既被学术研究人员又被社区成员所理解和接受。然而,未来的研究应该重新审视在衡量发展中使用的策略的理解和描述。