Centre for Primary Care and Health Services Research, University of Manchester, Manchester, and honorary research fellow, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
Participatory Health Research Unit, School of Medicine and Health Research Institute, University of Limerick, Limerick, Ireland.
Br J Gen Pract. 2024 Jul 25;74(745):e552-e559. doi: 10.3399/BJGP.2023.0263. Print 2024 Aug.
Health policy promotes patient participation in decision making about service organisation. In English general practice this happens through contractually required patient participation groups (PPGs). However, there are problems with the enactment of PPGs that have not been systematically addressed.
To observe how a co-designed theory-informed intervention can increase representational legitimacy and facilitate power sharing to support PPGs to influence decision making about general practice service improvement.
Participatory action research to implement the intervention in two general practices in the North of England was undertaken. The intervention combined two different participatory practices: involving externally facilitated meetings with PPG members and staff; and with the wider patient population using a bespoke discrete choice experiment (DCE).
To illustrate decision making in PPGs, qualitative data are presented from participant observation notes and photographed visual data generated through participatory methods. The DCE results are summarised to illustrate how wider population priorities contributed to overall decision making. Observational data were thematically analysed using normalisation process theory with support from a multi-stakeholder co-research group.
In both general practices, patients influenced decision making during PPG meetings and through the DCE, resulting in bespoke patient-centred action plans for service improvement. Power asymmetries were addressed through participatory methods, clarification of PPG roles in decision making, and addressing representational legitimacy through wider survey consultation.
Combining participatory practices and facilitated participatory methods enabled patients to influence decision making about general practice service improvement. The policy of mandatory PPGs needs updating to recognise the need to resource participation in a meaningful way.
卫生政策促进患者参与服务组织决策。在英国的普通实践中，这是通过合同要求的患者参与小组（PPG）实现的。然而，PPG 的制定存在尚未得到系统解决的问题。
观察经过共同设计的理论指导干预措施如何增加代表性合法性，并促进权力共享，以支持 PPG 影响有关普通实践服务改进的决策。
在英格兰北部的两家普通实践中进行了参与式行动研究，以实施干预措施。该干预措施结合了两种不同的参与式实践：一是与 PPG 成员和工作人员举行外部促进的会议；二是与更广泛的患者群体一起使用定制的离散选择实验（DCE）。
为了说明 PPG 中的决策制定，本文从参与者观察笔记和通过参与式方法生成的照片视觉数据中呈现了定性数据。总结 DCE 结果以说明更广泛的人群优先事项如何对整体决策做出贡献。观察数据使用正常化进程理论进行主题分析，并得到多利益相关者共同研究小组的支持。
在两家普通实践中，患者在 PPG 会议期间以及通过 DCE 影响了决策制定，从而为服务改进制定了定制的以患者为中心的行动计划。通过参与式方法、澄清 PPG 在决策中的角色以及通过更广泛的调查咨询解决代表性合法性问题，解决了权力不对称问题。
结合参与式实践和促进式参与式方法，使患者能够影响普通实践服务改进的决策。强制性 PPG 政策需要更新，以认识到以有意义的方式为参与提供资源的必要性。
