Institute of Health Policy, Management and Evaluation, University of Toronto, 155 College Street, 4th Floor, Toronto, ON, M5T 3M6, Canada.
Department of Community Health Sciences, University of Calgary, 3280 Hospital Drive NW, 3rd Floor, Calgary, AB, T2N 4Z6, Canada.
Health Res Policy Syst. 2018 Aug 30;16(1):87. doi: 10.1186/s12961-018-0361-6.
Interest in public involvement in health research projects has led to increased attention on the coordination of public involvement through research organisations, networks and whole systems. We draw on previous work using the 'health research system' framework to explore organisational actors and stewardship functions relevant to governance for public involvement.
To inform efforts in Ontario, Canada, to mobilise public involvement across the provincial health research enterprise, we conducted an exploratory, qualitative descriptive study of efforts in two jurisdictions (England, United Kingdom, and Alberta, Canada) where there were active policy efforts to support public involvement, alongside jurisdiction-wide efforts to mobilise health research. Focusing on the efforts of public sector organisations with responsibility for funding health research, enabling public involvement, and using research results, we conducted in-depth, semi-structured interviews with 26 expert informants and used a qualitative thematic approach to explore how the involvement of publics in health research has been embedded and supported.
We identified three sets of common issues in efforts to advance public involvement. First, the initial aim to embed public involvement leveraged efforts to build self-conscious research 'systems', and mobilised policy guidance, direction, investment and infrastructure. Second, efforts to sustain public involvement aimed to deepen involvement activity and tackle diversity limitations, while managing the challenges of influencing research priorities and forging common purpose on the evaluation of public involvement. Finally, public involvement was itself an influential force, with the potential to reinforce - or complicate - the ties that link actors within research systems, and to support - or constrain - the research system's capacity to serve and strengthen health systems.
Despite differences in the two jurisdictions analysed and in the organisation of public involvement within them, the supporters and stewards of public involvement sought to leverage research systems to advance public involvement, anticipated similar opportunities for improvement in involvement processes and identified similar challenges for future involvement activities. This suggests the value of a health research system framework in governance for public involvement, and the importance of public involvement for the success of health research systems and the health systems they aim to serve.
公众对参与健康研究项目的兴趣促使人们越来越关注通过研究组织、网络和整个系统来协调公众参与。我们借鉴了先前使用“健康研究系统”框架的工作，以探讨与公众参与治理相关的组织行为体和管理职能。
为了推动加拿大安大略省在全省健康研究事业中开展公众参与工作，我们对两个司法管辖区（英国英格兰和加拿大艾伯塔省）进行了探索性的定性描述性研究，这两个司法管辖区都在积极努力支持公众参与，并在整个司法管辖区内推动健康研究。我们专注于负责资助健康研究、促进公众参与和使用研究成果的公共部门组织的努力，对 26 名专家进行了深入的半结构化访谈，并采用定性主题方法探讨了公众参与健康研究是如何嵌入和得到支持的。
我们在推进公众参与工作中发现了三组共同的问题。首先，将公众参与纳入最初目标是利用建立自觉的研究“系统”的努力，并调动政策指导、方向、投资和基础设施。其次，维持公众参与的努力旨在深化参与活动并解决多样性限制，同时应对影响研究优先事项和为公众参与评估建立共同目标的挑战。最后，公众参与本身就是一种有影响力的力量，有可能加强或使研究系统内的行为体之间的联系复杂化，支持或限制研究系统服务和加强卫生系统的能力。
尽管分析的两个司法管辖区存在差异，而且它们内部的公众参与组织方式也存在差异，但公众参与的支持者和管理者试图利用研究系统来推进公众参与，预计参与过程会有类似的改进机会，并确定了未来参与活动的类似挑战。这表明健康研究系统框架在公众参与治理方面具有价值，并且公众参与对于健康研究系统及其旨在服务的卫生系统的成功具有重要意义。
