Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, PA, USA.
The Ethox Centre, Medical Sciences Division, University of Oxford, Oxford, UK.
Bioethics. 2019 Jul;33(6):708-715. doi: 10.1111/bioe.12584. Epub 2019 Apr 8.
Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy on the basis of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI-based policies.
患者和公众参与（PPI）在卫生研究和卫生政策领域得到了广泛支持，但对于 PPI 的确切含义或理由仍存在分歧。我们认为，要阐明 PPI 的含义和理由，重要的一步是拆分熟悉的缩写词，并区分患者和公众参与。具体来说，我们认为患者参与应该是指根据个人对特定疾病的经验，将其纳入卫生研究或政策的实践，而公众参与应该是指根据个人作为相关人群成员的身份，将其纳入卫生政策或研究的实践。通过分析来自英国、澳大利亚和美国的案例，我们展示了我们提出的区分如何为关于 PPI 的对话提供急需的清晰度，同时指导未来基于 PPI 的政策的制定和评估。
