Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK.
Usher Institute, University of Edinburgh, Edinburgh, UK.
BMC Med. 2020 Apr 13;18(1):79. doi: 10.1186/s12916-020-01544-7.
Patient and public involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. To be meaningful, all stakeholders need to actively engage in this exchange of expertise. However, despite some funders requiring PPI plans to be included in grant applications, there remains a gap between what is expected and what is delivered.
As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of 'keeping patients at the heart of everything we do'. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion.
With adaptation, the AUKCAR PPI model can be translated to international contexts.
患者和公众参与（PPI）研究设想在研究项目的整个生命周期中，学者、临床医生和 PPI 同事之间建立一种关系，以便在适当的时候告知、计划、执行、传播和转化研究。为了有意义，所有利益相关者都需要积极参与这种专业知识的交流。然而，尽管一些资助者要求在资助申请中包含 PPI 计划，但期望和实际交付之间仍然存在差距。
作为一个范例，我们反思了在英国哮喘协会应用研究中心（AUKCAR）中，我们如何着手创建一个支持性的、有组织的环境，其首要价值是“将患者放在我们所做的一切的核心”。关键在于规划和创建一个有适当资金支持的组织基础设施，配备专门的 PPI 研究人员，同时制定并期望遵守一套商定的规范和价值观。具体来说，期望 AUKCAR 博士生和早期职业研究人员参与 PPI 已经建立了一种我们希望能够持续的工作模式。定期的互动和积极主动的患者负责人增加了 PPI 网络的凝聚力。
通过调整，AUKCAR 的 PPI 模式可以转化为国际环境。
