“PPI？听起来像是支付保护保险”：来自有实际经验的专家小组对一项物质使用与无家可归问题研究的反思与经验教训。
"PPI? That sounds like Payment Protection Insurance": Reflections and learning from a substance use and homelessness study Experts by Experience group.
作者信息
Foster Rebecca, Carver Hannah, Wallace Jason, Dunedin Alex, Burridge Stan, Foley Philip, Pauly Bernie, Parkes Tessa
机构信息
Salvation Army Centre for Addiction Services and Research, Faculty of Social Sciences, 4S26 RG Bomont Building, University of Stirling, Stirling, FK9 4LA, UK.
The Scottish Drugs Forum, 91 Mitchell Street, Glasgow, UK.
出版信息
Res Involv Engagem. 2021 Nov 20;7(1):82. doi: 10.1186/s40900-021-00324-8.
BACKGROUND
Patient and Public Involvement in research is important for citizenship, accountability and transparency, and has the practical benefit of helping to ensure its quality and applicability. Involving members of the public in research is becoming increasingly commonplace, in the UK and internationally. It is essential that public involvement is inclusive of individuals and their diverse life experiences, including challenging experiences that may be associated with stigma and social exclusion. The involvement of people with lived/living experience of substance use and homelessness in research is increasing in response to increased recognition of the importance of inclusion and the benefits conferred to research.
MAIN BODY
In this commentary, we share our own experiences of being part of a Patient and Public Involvement group that was convened during a feasibility study of a peer-delivered harm reduction intervention. We are a diverse group but share experience of the field of substance use/homelessness, as people with lived/living experience, and as researchers and practitioners. We share our reflections and learning, as well as offer recommendations for researchers working in our field. Our group worked together to make a positive and deliberate contribution to the study. This did not happen by chance but required the development of mutual trust and respect, with each member having a commitment to support the group for its two-year duration.
SHORT CONCLUSION
It is important for researchers to appreciate that meaningful Patient and Public Involvement is very valuable but requires a commitment from all involved. Regarding our field of substance use and homelessness specifically, it is essential that people with these experiences have opportunities to contribute to research and can do so in a meaningful way. People with lived/living experience are able to bring to life the rich tapestry of others' experiences. However, the involvement must be neither tokenistic nor indifferent to the wider challenges common to these experiences.
背景
患者及公众参与研究对于公民身份、问责制和透明度而言至关重要，并且在确保研究质量和适用性方面具有实际益处。在英国及国际上，让公众参与研究正变得越来越普遍。至关重要的是，公众参与应涵盖个人及其多样的生活经历，包括可能与耻辱感和社会排斥相关的具有挑战性的经历。随着对包容性的重要性以及研究带来的益处的认识不断提高，有物质使用和无家可归生活经历的人参与研究的情况也在增加。
正文
在本评论中，我们分享了自己作为患者及公众参与小组一员的经历，该小组是在一项由同伴提供的减少伤害干预措施的可行性研究期间召集的。我们是一个多元化的群体，但作为有物质使用/无家可归生活经历的人，以及作为研究人员和从业者，我们在物质使用/无家可归领域有共同的经历。我们分享我们的思考和学习心得，并为在我们这个领域工作的研究人员提供建议。我们的小组共同努力，为该研究做出了积极且深思熟虑的贡献。这并非偶然发生，而是需要建立相互信任和尊重，每个成员都承诺在为期两年的时间里支持该小组。
简短结论
研究人员必须认识到，有意义的患者及公众参与非常有价值，但需要所有参与者的承诺。具体就我们的物质使用和无家可归领域而言，有这些经历的人有机会为研究做出贡献并能以有意义的方式这样做是至关重要的。有生活经历的人能够生动展现他人丰富多样的经历。然而，这种参与既不能是象征性的，也不能对这些经历所共有的更广泛挑战漠不关心。
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