Recommendations for patient engagement in guideline development panels: A qualitative focus group study of guideline-naïve patients.
Recommendations for patient engagement in guideline development panels: A qualitative focus group study of guideline-naïve patients.
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DOI：
10.1371/journal.pone.0174329
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发表时间：
2017
期刊：
影响因子：
3.7
通讯作者：
Gagliardi AR
中科院分区：
文献类型：
--
作者：
Armstrong MJ;Mullins CD;Gronseth GS;Gagliardi AR
国际上提倡患者和消费者参与临床实践指南的制定，但探索成功参与机制的研究有限。调查潜在患者/消费者指南代表对参与相关主题的看法，包括指南制定小组的组成以及参与的障碍和促进因素。参与者是不懂指南的志愿者，其项目旨在将社区成员与不同年龄、性别、种族和与医疗保健专业人员互动的经验程度的学术研究联系起来。使用定性描述方法进行和分析了三个焦点小组和一个关键知情人访谈。参与者推荐小型、多样化的指南制定小组，让多个患者/消费者利益相关者参与进来，这些利益相关者彼此之间或专业小组成员之前没有关系。对于患者/消费者和专业利益相关者之间的理想平衡尚未达成共识。会前阅读/培训和确定的联系人被认为是早期成功参与的关键；建议采用熟练的协调员、易于理解的演讲和语言以及建立征求患者意见的机制，以提高会议的参与度。大多数关于有效患者/消费者参与指南的建议都需要深思熟虑和规划，但几乎不需要额外费用，这使得希望实现更有意义的患者和消费者参与的指南开发者可以轻松获得这些策略。
Patient and consumer engagement in clinical practice guideline development is internationally advocated, but limited research explores mechanisms for successful engagement. To investigate the perspectives of potential patient/consumer guideline representatives on topics pertaining to engagement including guideline development group composition and barriers to and facilitators of engagement. Participants were guideline-naïve volunteers for programs designed to link community members to academic research with diverse ages, gender, race, and degrees of experience interacting with health care professionals. Three focus groups and one key informant interview were conducted and analyzed using a qualitative descriptive approach. Participants recommended small, diverse guideline development groups engaging multiple patient/consumer stakeholders with no prior relationships with each other or professional panel members. No consensus was achieved on the ideal balance of patient/consumer and professional stakeholders. Pre-meeting reading/training and an identified contact person were described as keys to successful early engagement; skilled facilitators, understandable speech and language, and established mechanisms for soliciting patient opinions were suggested to enhance engagement at meetings. Most suggestions for effective patient/consumer engagement in guidelines require forethought and planning but little additional expense, making these strategies easily accessible to guideline developers desiring to achieve more meaningful patient and consumer engagement.