Ashworth Rosalie, Davidson Helen, Hartley Fiona, Henry Winnie, Hill Alyson, Kerr Jacqueline, Law Emma, Robertson Martin, Ross David, Welstead Miles, Russ Tom C
Patient and Public Involvement Lead, NRS NDN, NHS Tayside, Dundee, UK.
NRS NDN, NHS Tayside, Dundee, UK.
Res Involv Engagem. 2025 May 6;11(1):43. doi: 10.1186/s40900-024-00669-w.
"Nothing about us without us" has become a fundamental part of dementia activism, with people affected by the condition keen to make sure that research aligns with their needs and expectations as reported (Bryden in Nothing about us, without us! 20 years of dementia advocacy, Jessica Kingsley Publishers, UK, 2015). Over the past three years, the 'patient and public involvement group' for NRS Neuroprogressive and Dementia Network has been transformed into 'Partners in Research', a name and group identity chosen by people with lived experience to represent the equal partnership they hoped to embark on as part of their involvement in the network. The co-authors include people living with dementia or supporting someone with dementia, and over the course of the paper we share how our work has evolved; the types of activities we have been part of; reflections on the barriers to 'patient and public involvement'; and consideration of where we go next with involving people with lived experience in research. Our paper presents several activities in which Partners in Research contributed to new knowledge and understanding of dementia. Firstly, we share the challenges faced in seeking to develop a 'Scottish Strategy to Coproduction', in particular, how difficult it was to bring people from different organisations and spaces together. Secondly, we share the experiences of co-authoring a book on dementia, an innovative and impactful piece of work where co-authors were able to have a voice and share their expertise. Thirdly, we look at Partners in Research involvement in research input requests received by academics across the UK looking for 'patient and public involvement' in the design, development and dissemination of their research. Finally, we explore the visibility of 'patient and public involvement', the barriers to sustainability and the future directions for Partners in Research. In particular, the need for dedicated funding for PPI activities, increased ethical oversight in PPI activities, and appropriate space and time to continue building on the ideas of people with lived experience.
“没有我们的参与就没有关于我们的研究”已成为痴呆症维权行动的一项基本原则，正如所报道的那样，受这种疾病影响的人们迫切希望确保研究符合他们的需求和期望（布莱登著《没有我们的参与就没有关于我们的研究！痴呆症倡导20年》，杰西卡·金斯利出版社，英国，2015年）。在过去三年里，NRS神经退行性疾病与痴呆症网络的“患者及公众参与小组”已转变为“研究伙伴”，这个名称和小组身份是由有实际经历的人选定的，代表了他们希望作为参与该网络的一部分而建立的平等伙伴关系。共同作者包括患有痴呆症的人或支持痴呆症患者的人，在本文中，我们分享了我们的工作是如何发展的；我们参与的活动类型；对“患者及公众参与”障碍的反思；以及对我们下一步如何让有实际经历的人参与研究的思考。我们的论文介绍了“研究伙伴”为痴呆症新知识和理解做出贡献的几项活动。首先，我们分享了在寻求制定“苏格兰共同生产战略”过程中面临的挑战，特别是将来自不同组织和领域的人聚集在一起有多困难。其次，我们分享了共同撰写一本关于痴呆症书籍的经历，这是一项创新且有影响力的工作，共同作者能够发声并分享他们的专业知识。第三，我们审视了“研究伙伴”参与英国各地学者收到的研究投入请求的情况，这些学者在研究的设计、开发和传播中寻求“患者及公众参与”。最后，我们探讨了“患者及公众参与”的可见性、可持续性的障碍以及“研究伙伴”的未来方向。特别是，需要为患者及公众参与活动提供专门资金，加强对患者及公众参与活动的伦理监督，以及有适当的空间和时间来继续基于有实际经历的人的想法开展工作。
