Department of Medical Statistics, London School of Hygiene and Tropical Medicine, University of London, London, UK.
Women and Children First, London, UK.
Health Expect. 2023 Aug;26(4):1658-1667. doi: 10.1111/hex.13771. Epub 2023 May 1.
The COVID-19 pandemic brought rapid and major changes to research, and those wishing to carry out Patient and Public Involvement (PPI) activities faced challenges, such as restrictions on movement and contact, illness, bereavement and risks to potential participants. Some researchers moved PPI to online settings during this time but remote consultations raise, as well as address, a number of challenges. It is important to learn from PPI undertaken in this period as face-to-face consultation may no longer be the dominant method for PPI.
UK stay-at-home measures announced in March 2020 necessitated immediate revisions to the intended face-to-face methods of PPI consultation for the ESORT Study, which evaluated emergency surgery for patients with common acute conditions. PPI plans and methods were modified to all components being online. We describe and reflect on: initial plans and adaptation; recruitment; training and preparation; implementation, contextualisation and interpretation. Through first-hand accounts we show how the PPI processes were developed, experienced and viewed by different partners in the process.
While concerns have been expressed about the possible limiting effects of forgoing face-to-face contact with PPI partners, we found important benefits from the altered dynamic of the online PPI environment. There were increased opportunities for participation which might encourage the involvement of a broader demographic, and unexpected benefits in that the online platform seemed to have a 'democratising' effect on the meetings, to the benefit of the PPI processes and outcomes. Other studies may however find that their particular research context raises particular challenges for the use of online methods, especially in relation to representation and inclusion, as new barriers to participation may be raised. It is important that methodological challenges are addressed, and researchers provide detailed examples of novel methods for discussion and empirical study.
We report a process which involved people with lived experience of emergency conditions and members of the public. A patient member was involved in the design and implementation, and two patients with lived experience contributed to the manuscript.
COVID-19 大流行给研究带来了迅速而重大的变化，希望开展患者和公众参与（PPI）活动的人面临着挑战，例如行动和接触受限、疾病、丧亲之痛以及对潜在参与者的风险。在此期间，一些研究人员将 PPI 转移到在线环境中，但远程咨询不仅带来了许多挑战，也需要解决这些挑战。从这段时间内进行的 PPI 中吸取经验教训很重要，因为面对面咨询可能不再是 PPI 的主要方法。
2020 年 3 月英国发布居家令，这使得 ESORT 研究中原本计划的面对面 PPI 咨询方法必须立即修改，该研究评估了常见急症患者的紧急手术。PPI 计划和方法被修改为全部采用在线方式。我们描述并反思了：最初的计划和调整；招募；培训和准备；实施、本土化和解释。通过第一手资料，我们展示了不同合作伙伴如何在这一过程中发展、体验和看待 PPI 流程。
虽然人们对放弃与 PPI 合作伙伴的面对面接触可能会产生的限制影响表示担忧，但我们发现，在线 PPI 环境的变化动态带来了重要的好处。参与的机会增加，这可能会鼓励更广泛的人群参与，并且意想不到的好处是，在线平台似乎对会议产生了“民主化”的影响，从而使 PPI 流程和结果受益。然而，其他研究可能会发现，他们特定的研究背景对在线方法的使用提出了特殊挑战，特别是在代表性和包容性方面，因为新的参与障碍可能会出现。解决方法上的挑战很重要，研究人员应提供新颖方法的详细示例以供讨论和实证研究。
我们报告了一个涉及有紧急情况生活经历的人和公众的参与过程。一名患者成员参与了设计和实施，两名有生活经历的患者为本文做出了贡献。
