Mitchell Sarah Jane, Slowther Anne-Marie, Coad Jane, Akhtar Shazaan, Hyde Elizabeth, Khan Dena, Dale Jeremy
Warwick Medical School, University of Warwick, Coventry, UK.
Faculty of Health and Life Sciences, Coventry University, Coventry, UK.
Arch Dis Child Educ Pract Ed. 2019 Aug;104(4):195-200. doi: 10.1136/archdischild-2017-313480. Epub 2018 Feb 9.
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work.
患者及公众参与（PPI）在研究以及与医疗服务相关的质量改进活动中都很重要。虽然PPI活动不需要正式的伦理批准，但通过引入复杂的医学技术概念、具有挑战性的语言或敏感的主题领域，它们可能引发一些伦理问题。在这一领域，几乎没有已发表的文献来指导伦理实践。在一项儿科姑息治疗的研究中，我们一直在与儿童及青少年开展患者及公众参与活动。患者及公众参与在申请过程中就已启动，并在研究进展过程中持续指导和塑造研究。在患者及公众参与工作的任何时候都可能出现伦理问题。尽管许多问题可以预测并做好规划，但患者及公众参与的性质意味着研究人员可能会遇到他们之前未曾考虑过的想法和概念，这就需要反思性和应对性的方法。本文描述了我们如何在研究中思考并解决患者及公众参与的潜在伦理问题。所形成的方法提供了一个可适用于一系列情况的框架，对于正在开展患者及公众参与以指导其工作的研究人员和临床医生具有直接的参考价值。
