Sheffield Institute for Translational Neuroscience, University of Sheffield , Sheffield , United Kingdom.
Sheffield Motor Neuron Disease Care and Research Centre, Royal Hallamshire Hospital , Sheffield , United Kingdom.
Amyotroph Lateral Scler Frontotemporal Degener. 2019 Nov;20(7-8):511-520. doi: 10.1080/21678421.2019.1643373. Epub 2019 Aug 2.
Patient and public involvement (PPI) is a relatively new practice whereby researchers involve patients and the public in the conduct of their research. The Sheffield Motor Neurone Disorders Research Advisory Group (SMNDRAG) is one of the first groups to specialise in motor neuron disease (MND). Its members include people living with MND, carers, relatives, volunteers, clinicians, and scientists. Our aim was to explore the experiences of those who participate in, organise and work with the SMNDRAG. We conducted 13 semi-structured interviews: 10 with members of the SMNDRAG and three with researchers who have worked with the group. We used thematic analysis to identify ways in which the group influenced research and the barriers and enablers to PPI. A number of motivations for participating in the SMNDRAG were reported but the majority were altruistic. The SMNDRAG offered individuals psychosocial and intellectual benefits. The SMNDRAG has overcome a number of practical and psychological barriers to developing a successful and effective collaborative partnership resulting in a positive impact on research and researchers at each stage of the research process. For example, the group identified research priorities which ensured that research was patient-focused. However, several barriers remain, including the lack of diversity within the group and the perception that PPI participation requires a "certain type of person." PPI can make a valuable contribution to all aspects of research and can have a positive impact on those involved. We recommend ways in which PPI can and should be incorporated into research.
患者和公众参与（PPI）是一种相对较新的实践，研究人员通过这种实践让患者和公众参与他们的研究。谢菲尔德运动神经元疾病研究咨询小组（SMNDRAG）是首批专门研究运动神经元疾病（MND）的小组之一。其成员包括患有 MND 的人、护理人员、亲属、志愿者、临床医生和科学家。我们的目的是探讨参与、组织和与 SMNDRAG 合作的人的经验。我们进行了 13 次半结构化访谈：10 次与 SMNDRAG 的成员进行，3 次与与该小组合作过的研究人员进行。我们使用主题分析来确定该小组如何影响研究以及 PPI 的障碍和促成因素。报告了参与 SMNDRAG 的一些动机，但大多数是利他主义的。SMNDRAG 为个人提供了心理社会和智力上的好处。SMNDRAG 克服了许多实际和心理障碍，成功地建立了一个有效的合作伙伴关系，对研究和研究人员在研究过程的每个阶段都产生了积极的影响。例如，该小组确定了研究重点，确保研究以患者为中心。然而，仍然存在一些障碍，包括小组内部缺乏多样性以及对 PPI 参与需要“某种类型的人”的看法。PPI 可以为研究的各个方面做出有价值的贡献，并对参与者产生积极影响。我们建议将 PPI 纳入研究的方式和应该纳入的方式。
