Suri Sophie, Harrison Samantha L, Bevin-Nicholls Alex, Shenton Felicity, Atkinson Sandra, Earle Jenny, Williams Gaynor, Lally Joanne
School of Health and Life Sciences, Teesside University, Middlesbrough, TS1 3BA, UK.
NIHR Applied Research Collaboration, North-East and North Cumbria, Newcastle Upon Tyne, UK.
Res Involv Engagem. 2024 Oct 31;10(1):113. doi: 10.1186/s40900-024-00624-9.
Working alongside patients and the public to shape and engage with research, Patient and Public Involvement and Engagement (PPIE), facilitates more impactful research outcomes. The UK Standards for Public Involvement provides a framework for conducting PPIE; however, they do not refer directly to ethical conduct. Research ethics involve the moral principles that govern researchers' actions, and securing ethical approval from a research ethics committee is necessary before starting a study. Nonetheless, in the UK, ethical approval is not needed for PPIE activities.
By its very nature, PPIE requires interaction with patients and public about their lived/living experience of often sensitive and emotional topics. We need to consider ethical principles of PPIE, and potential for harm to those involved. The authors call for ethics guidance to be included in the UK Standards for Public Involvement and discuss this with regards to (a) emotional risk (b) physical risk (c) confidentiality and personal data (d) support versus paternalism (e) marginalisation and (f) building and maintaining healthy relationships.
The argument presented here has been informed by the authors' own experiences in topic areas ranging from transplantation, respiratory disease and health inequalities to women living with domestic abuse, and suggests that although requiring ethical approval for PPIE would be a step too far, and stifle research progress, PPIE needs to be conducted with an 'ethical anchor' to facilitate ethical practice and mitigate risk.
患者与公众参与和介入（PPIE）与患者及公众合作，以塑造研究并让其参与其中，有助于产生更具影响力的研究成果。英国公众参与标准为开展PPIE提供了一个框架；然而，它们并未直接提及道德行为。研究伦理涉及指导研究人员行为的道德原则，在开展研究之前，必须获得研究伦理委员会的伦理批准。尽管如此，在英国，PPIE活动无需伦理批准。
就其本质而言，PPIE需要就患者和公众对通常敏感且情绪化的话题的生活经历进行互动。我们需要考虑PPIE的伦理原则以及对相关人员造成伤害的可能性。作者呼吁将伦理指导纳入英国公众参与标准，并就以下方面进行讨论：（a）情感风险（b）身体风险（c）保密与个人数据（d）支持与家长式作风（e）边缘化（f）建立和维护健康关系。
本文作者在从移植、呼吸系统疾病和健康不平等到遭受家庭虐待的女性等主题领域的自身经历为这里提出的论点提供了依据，并表明尽管要求对PPIE进行伦理批准可能走得太远，会阻碍研究进展，但PPIE需要以“伦理锚”来进行，以促进道德实践并降低风险。
