De Simoni Anna, Jackson Tracy, Inglis Humphrey Wendy, Preston Jennifer, Mah Heather, Wood Helen E, Kinley Emma, Gonzalez Rienda Laura, Porteous Carol
Wolfson Institute of Population Health, Asthma UK Centre for Applied Research, Queen Mary University of London, London, UK.
Usher Institute of Population Health Sciences and Centre for Medical Informatics, Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK.
Res Involv Engagem. 2023 Mar 25;9(1):16. doi: 10.1186/s40900-023-00424-7.
Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ethical considerations, as well as to advise on solutions. The National Institute for Health and Care Research UK Standards for Public Involvement in Research embody best practice for PPI, including support and learning opportunities that build confidence and skills for members of the public to play an invaluable and mutually productive role in research. However, the pivotal role of research and professional services (management and administrative) staff within academic institutions for sustaining and making this involvement successful is often overlooked.
It takes significant effort to develop and sustain effective PPI in research. The six UK Standards for Public Involvement highlight the need for consistent, inclusive, well-governed and mutually respectful working relationships to sustain effective PPI contributions in health research. Productivity across a team of lay and academic members requires organisation and experience of implementing these standards by a dedicated PPI team, yet advice on PPI finances is usually focused on costs for patient panel members, and budgets in funding applications rarely consider the wider PPI team behind this involvement. As an exemplar, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has developed a dedicated PPI Platform, with guidance for how PPI should be embedded throughout the research lifecycle, and detailed information to support the costing of PPI in funding applications. AUKCAR's work with established researchers, as well as Early Career Researchers and PhD students, is at the heart of a campaign to raise awareness of the importance of PPI in effective research planning.
Focusing attention on the staff behind best practice involvement in health research may stimulate a much-needed discussion to ensure flourishing PPI capacity, with significant patient and public benefit. With adaptation, the PPI expertise within AUKCAR can be translated more widely.
患者及公众参与(PPI)团体作为学术研究人员和机构的合作伙伴正变得越来越成熟,以确保研究对最终用户来说是重要且相关的,识别可能存在伦理考量的领域,并就解决方案提供建议。英国国家卫生与保健研究所在研究中公众参与的标准体现了PPI的最佳实践,包括支持和学习机会,这些机会能增强公众成员的信心和技能,使其在研究中发挥宝贵且互利的作用。然而,学术机构内研究和专业服务(管理和行政)人员在维持并使这种参与取得成功方面的关键作用常常被忽视。
在研究中发展并维持有效的PPI需要付出巨大努力。英国公众参与的六项标准强调,需要建立一致、包容、管理良好且相互尊重的工作关系,以维持在健康研究中有效的PPI贡献。由非专业和学术成员组成的团队的工作效率需要一个专门的PPI团队来组织并实施这些标准,但关于PPI资金的建议通常只关注患者小组的成本,而资金申请中的预算很少考虑这种参与背后更广泛的PPI团队。作为一个范例,我们思考英国哮喘应用研究中心(AUKCAR)如何开发了一个专门的PPI平台,提供了关于如何在整个研究生命周期中融入PPI的指导,以及支持资金申请中PPI成本核算的详细信息。AUKCAR与资深研究人员以及早期职业研究人员和博士生的合作,是提高对PPI在有效研究规划中的重要性认识的一项活动的核心。
关注健康研究中最佳实践参与背后的人员,可能会引发一场急需的讨论,以确保PPI能力蓬勃发展,并给患者和公众带来重大益处。经过调整,AUKCAR内部的PPI专业知识可以更广泛地推广。