Drozdowska Bogna A, Cristall Nora, Fladt Joachim, Jaroenngarmsamer Tanaporn, Sehgal Arshia, McDonough Rosalie, Goyal Mayank, Ganesh Aravind
Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Department of Radiology, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Health Res Policy Syst. 2025 Mar 3;23(1):29. doi: 10.1186/s12961-025-01306-y.
The medical research community widely endorses the importance of ensuring that research outputs are relevant and accessible to knowledge users, as well as the value of engaging the latter in the conduct of research to achieve these goals. However, it appears these principles are reflected in actual medical research practices to a limited extent. To better understand this dissonance, we conducted a qualitative investigation into the perspectives of key stakeholders on bridging the knowledge-to-action gap and patient and public engagement.
The Priorities and Expectations of Researchers, Donors, Patients and the Public Regarding the Funding and Conduct of Medical Research (PERSPECT) qualitative study involved in-depth, semi-structured interviews with representatives of four stakeholder groups. Among other topics, participants were asked to discuss issues related to moving medical research knowledge into action (knowledge translation), including patient and public engagement during the research journey as a prerequisite to the success of this process. We analysed collected data employing an interpretative grounded theory approach. Data collection was ended once thematic saturation had been attained.
A total of 41 interviews were completed and analysed (with 10 patients, 10 members of the general public, 11 researchers and 10 funders). Many participants expressed a belief in the importance of engaging patients in the research process, as well as ensuring that study findings reach beyond academic communities. However, multiple challenges and barriers were identified to implementing these values in practice, including: researchers having limited knowledge and tools to foster partnerships with community members; research outputs being inaccessible to the wider public; and the public having insufficient capacity - in view of the required time, effort and knowledge - to assimilate findings and contribute to ongoing research. Cumulatively, interviews indicated a continuing disconnect between research and lay communities, where each stakeholder group holds some responsibility for improving the current paradigm.
Existing gaps in communication, knowledge and relevant competencies are fuelling a disconnect between research and lay communities. Successfully moving research knowledge into action requires joint efforts of multiple stakeholder groups with support from external resources to ensure necessary training, expertise and credible dissemination platforms.
医学研究界广泛认可确保研究成果与知识使用者相关且可获取的重要性，以及让知识使用者参与研究以实现这些目标的价值。然而，这些原则在实际医学研究实践中的体现程度似乎有限。为了更好地理解这种不一致，我们对关键利益相关者在弥合知识转化差距以及患者和公众参与方面的观点进行了定性调查。
关于医学研究资金与开展的研究者、捐赠者、患者及公众的优先事项与期望（PERSPECT）定性研究，涉及对四个利益相关者群体的代表进行深入的半结构化访谈。除其他主题外，参与者被要求讨论将医学研究知识转化为行动（知识转化）相关的问题，包括在研究过程中患者和公众的参与，这是该过程成功的先决条件。我们采用解释性扎根理论方法分析收集到的数据。一旦达到主题饱和，数据收集即结束。
共完成并分析了41次访谈（10名患者、10名普通公众、11名研究者和10名资助者）。许多参与者表示相信让患者参与研究过程以及确保研究结果超越学术群体的重要性。然而，在实践中落实这些价值观存在多重挑战和障碍，包括：研究者促进与社区成员建立伙伴关系的知识和工具有限；广大公众无法获取研究成果；鉴于所需的时间、精力和知识，公众吸收研究结果并为正在进行的研究做出贡献的能力不足。总体而言，访谈表明研究与普通社区之间持续存在脱节，每个利益相关者群体都对改善当前模式负有一定责任。
沟通、知识和相关能力方面的现有差距加剧了研究与普通社区之间的脱节。要成功地将研究知识转化为行动，需要多个利益相关者群体共同努力，并获得外部资源的支持，以确保提供必要的培训、专业知识和可靠的传播平台。
