School of Public Health, University College Cork, Cork, Ireland.
Independent Patient and Public Involvement Partner, Co. Clare, Ireland.
Health Expect. 2020 Aug;23(4):870-883. doi: 10.1111/hex.13061. Epub 2020 May 1.
Guidelines recommend involving intervention users in the intervention development process. However, there is limited guidance on how to involve users in a meaningful and effective way.
The aim of this Study within a trial was to compare participants' experiences of taking part in one of three types of consensus meetings-people with diabetes-only, combined people with diabetes and health-care professionals (HCPs) or HCP-only meeting.
The study used a mixed methods convergent design. Quantitative (questionnaire) and qualitative (observation notes and semi-structured telephone interviews) data were collected to explore participants' experiences. A triangulation protocol was used to compare quantitative and qualitative findings.
People with diabetes (recruited via multiple strategies) were randomly assigned to attend the people with diabetes or combined meeting. HCPs (recruited through professional networks) attended the HCP or combined meeting based on their availability.
Sixteen people with diabetes and 15 HCPs attended meetings, of whom 18 participated in a telephone interview. Participants' questionnaire responses suggested similar positive experiences across the three meetings. Observation and semi-structured interviews highlighted differences experienced by participants in the combined meeting relating to: perceived lack of common ground; feeling empowered versus undervalued; needing to feel safe and going off task to fill the void.
The qualitative theme 'needing to feel safe' may explain the dissonance (disagreement) between quantitative and qualitative data. In this study, involving patients and HCPs simultaneously in a consensus process was not found to be as suitable as involving each stakeholder group separately.
指南建议让干预使用者参与干预措施的制定过程。然而，关于如何以有意义和有效的方式让使用者参与，指南提供的指导有限。
本试验内研究旨在比较参与者参与三种共识会议（仅限糖尿病患者、糖尿病患者和卫生保健专业人员（HCPs）联合会议或仅 HCP 会议）的体验。
本研究采用混合方法收敛设计。收集定量（问卷）和定性（观察记录和半结构化电话访谈）数据，以探索参与者的体验。采用三角分析方案比较定量和定性结果。
糖尿病患者（通过多种策略招募）被随机分配参加仅限糖尿病患者或联合会议。HCPs（通过专业网络招募）根据其可用性参加 HCP 或联合会议。
16 名糖尿病患者和 15 名 HCP 参加了会议，其中 18 名参加了电话访谈。参与者的问卷回答表明，三种会议的体验相似，均为积极。观察和半结构化访谈突出了参加联合会议的参与者的体验差异，包括：感觉缺乏共同基础；感觉被授权与被低估；需要感到安全，以及为了填补空白而分心。
定性主题“需要感到安全”可能解释了定量和定性数据之间的差异。在这项研究中，同时让患者和 HCP 参与共识过程并不像分别让每个利益相关者群体参与那样合适。
