March Christine A, Kazmerski Traci M, Moon Christine, Libman Ingrid M, Miller Elizabeth
Division of Pediatric Endocrinology and Diabetes, UPMC Children's Hospital of Pittsburgh, University of Pittsburgh, Pittsburgh, PA.
Division of Adolescent and Young Adult Medicine, UPMC Children's Hospital of Pittsburgh, University of Pittsburgh, Pittsburgh, PA.
Diabetes Spectr. 2021 Nov;34(4):419-424. doi: 10.2337/ds21-0004. Epub 2021 Aug 3.
Although the importance of stakeholder engagement (SE) for patient-centered research is recognized, few studies document SE processes and influence on research outcomes in the diabetes field. We applied a research-informed framework to evaluate the impact of SE on a pediatric diabetes study exploring school nurse perspectives on modern diabetes devices.
We recruited parents of children with type 1 diabetes, school nurses, and diabetes providers. Stakeholders convened virtually every 2 months for 12 months. Goals for SE included input on research materials, interpretation of findings, and future research directions. Processes were assessed using a validated survey. Immediate outcomes included changes to research materials and satisfaction. Secondary outcomes included research efficiency and value (acceptance by community partners).
Each role was represented at every meeting. The majority of stakeholders (>70%) completed the survey at study midpoint and end points. All surveyed indicated that they had received all desired information, shared feedback, and felt valued. Stakeholders were satisfied with the meeting frequency. Participants appreciated learning from each other and expressed enthusiasm for continued research participation. They described their role as one of consultant rather than research team members. SE resulted in five additional interview questions. Nearly 70 comments added to the interpretation of qualitative themes. Findings were published within 12 months and recognized by the state school nursing organization.
SE was well received and led to meaningful changes in content and dissemination of a diabetes study. A systematic approach to evaluating SE can increase scientific rigor and reproducibility and contribute to best practices for SE in diabetes research.
尽管利益相关者参与（SE）对以患者为中心的研究的重要性已得到认可，但很少有研究记录糖尿病领域的SE过程及其对研究结果的影响。我们应用了一个基于研究的框架来评估SE对一项儿科糖尿病研究的影响，该研究探讨了学校护士对现代糖尿病设备的看法。
我们招募了1型糖尿病患儿的家长、学校护士和糖尿病医疗服务提供者。利益相关者在12个月内每2个月进行一次线上会议。SE的目标包括对研究材料提供意见、对研究结果进行解读以及确定未来的研究方向。使用经过验证的调查问卷对过程进行评估。直接结果包括研究材料的变化和满意度。次要结果包括研究效率和价值（社区合作伙伴的接受程度）。
每次会议都有各角色的代表参加。大多数利益相关者（>70%）在研究中点和终点时完成了调查问卷。所有接受调查的人都表示他们收到了所有想要的信息，分享了反馈意见，并且感觉自己受到重视。利益相关者对会议频率感到满意。参与者很欣赏相互学习的过程，并对继续参与研究表示出热情。他们将自己的角色描述为顾问而非研究团队成员。SE导致增加了五个访谈问题。近70条评论被添加到定性主题的解读中。研究结果在12个月内发表，并得到了州学校护理组织的认可。
SE受到了广泛欢迎，并导致了糖尿病研究在内容和传播方面的有意义的变化。一种评估SE的系统方法可以提高科学严谨性和可重复性，并有助于糖尿病研究中SE的最佳实践。
