Department of Surgical Sciences, Uppsala University, Uppsala, Sweden.
Health Expect. 2021 Aug;24(4):1197-1206. doi: 10.1111/hex.13249. Epub 2021 May 5.
Patient representatives (PRs) have been involved for decades in health-care development, and their participation is increasingly sought in health-care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse.
To explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement.
Qualitative design using semi-structured interviews analysed by content analysis.
Interviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden.
Most participants considered the PR role important but mentioned several problems. PRs' contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present.
This study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care.
PRs were information givers in data collection.
患者代表（PR）参与医疗保健发展已有数十年的历史，各级医疗保健工作组（HCWG）越来越多地寻求他们的参与。然而，关于如何进一步发展这一角色以及改善团队合作的信息仍然很少。
探讨患者代表在临床实践指南（CPG）监测小组中的角色，描述他们的贡献，并确定改进的可能性。
使用半结构化访谈进行定性设计，通过内容分析进行分析。
访谈对象为 11 名 PR、13 名注册护士和 9 名医生，他们均为瑞典全国委员会成员，负责监测癌症 CPG。
大多数参与者认为 PR 角色很重要，但提到了几个问题。PR 的贡献受到以下因素的阻碍：对其角色的不确定性、其他小组成员的期望较低，以及他们觉得自己的贡献经常被忽视。一些专业人员质疑 PR 是否真正具有代表性，并表示有些话题不能在 PR 在场的情况下进行讨论。
本研究强调了尽管 PR 长期参与 HCWG，但仍存在许多未解决的基本问题。尽管 PR 角色和团队合作因小组而异，但大多数 PR 需要被授权积极参与团队合作，并充分利用他们的参与和知识。通过明确角色和期望来加强团队合作，可以使团队更加包容和平等，更有效地朝着改善医疗保健的目标努力。
PR 是数据收集的信息提供者。
