关键词: Community Participation Community-Based Participatory Research Implementation Science Patient Participation

Mesh : Humans Canada Patient Participation Biomedical Research / organization & administration Academies and Institutes / organization & administration

来  源:   DOI:10.1136/bmjopen-2023-082502   PDF(Pubmed)

Abstract:
BACKGROUND: Patient engagement (PE) or involvement in research is when patient partners are integrated onto teams and initiatives (not participants in research). A number of health research funding organisations have PE frameworks or rubrics but we are unaware of them applying and reporting on their own internal PE efforts. We describe our work at the Canadian Institutes of Health Research\'s Institute of Musculoskeletal Health and Arthritis (CIHR IMHA) to implement, evaluate and understand the impact of its internal PE strategy.
METHODS: A co-production model was used involving patient partners, a PE specialist and staff from IMHA. A logic model was co-developed to guide implementing and evaluating IMHA\'s PE strategy. Some of evaluating the PE strategy and understanding its impact was a collaboration between the Public and Patient Engagement Collaborative (McMaster University) and IMHA.
RESULTS: IMHA convened a PE Research Ambassador (PERA) group which co-led this work with the support of a PE specialist. In doing so, PERA had a number of meetings since 2020, set its own priorities and co-produced a number of outputs (video, publications, webinars, blog and modules called the How-to Guide for PE in Research). This work to evaluate and measure impacts of IMHA\'s PE strategy revealed positive results, for example, on PERA members, Institute Advisory Board members and staff, as well as beyond the institute based on uptake and use of the modules. Areas for improvement are mainly related to increasing the diversity of PERA and to improving accessibility of the PE outputs (more languages and formats).
CONCLUSIONS: Implementing a PE strategy within CIHR IMHA resulted in several PE activities and outputs with impacts within and beyond the institute. We provide templates and outputs related to this work that may inform the efforts of other health research funding organisations. We encourage health research funders to move beyond encouraging or requiring PE in funded projects to fully \'walk the talk\' of PE by implementing and evaluating their own PE strategies.
摘要:
背景:患者参与(PE)或参与研究是指将患者合作伙伴整合到团队和计划中(而不是研究参与者)。许多健康研究资助组织都有体育框架或规则,但我们不知道他们申请和报告自己的内部体育努力。我们描述了我们在加拿大健康研究院肌肉骨骼健康和关节炎研究所(CIHRIMHA)的工作,评估和了解其内部PE战略的影响。
方法:使用了涉及患者伴侣的联合生产模型,一名体育专家和IMHA的工作人员。共同开发了一个逻辑模型,以指导实施和评估IMHA的体育战略。一些评估体育战略和理解其影响是公众和患者参与协作(麦克马斯特大学)和IMHA之间的合作。
结果:IMHA召集了一个体育研究大使(PERA)小组,该小组在体育专家的支持下共同领导了这项工作。在这样做的时候,PERA自2020年以来举行了多次会议,设定了自己的优先事项,并共同制作了许多产出(视频,出版物,网络研讨会,博客和模块称为“研究中的PE操作指南”)。这项评估和衡量IMHA体育战略影响的工作显示出积极的结果,例如,在PERA成员上,研究所咨询委员会成员和工作人员,以及基于模块的吸收和使用的研究所之外。需要改进的领域主要与增加PERA的多样性和提高PE输出的可访问性(更多语言和格式)有关。
结论:在CIHRIMHA中实施体育战略导致了一些体育活动和产出,并在研究所内外产生了影响。我们提供与这项工作相关的模板和输出,可以为其他健康研究资助组织的努力提供信息。我们鼓励健康研究资助者超越鼓励或要求PE在资助项目中通过实施和评估自己的PE策略来充分“走出去”。
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