Spark Policy Institute, Denver, CO, USA.
Clinical and Translational Science Institute, Medical College of Wisconsin, Milwaukee, WI, USA.
J Gen Intern Med. 2019 Jan;34(1):125-131. doi: 10.1007/s11606-018-4701-6. Epub 2018 Oct 23.
In 2010, the Patient Centered Outcomes Research Institute (PCORI) was created to fund patient-centered research that meaningfully engages stakeholders impacted by that research. As a result, investigators became interested in understanding who are appropriate stakeholders and what meaningful engagement in research looks like (6, 8-10).
To understand how and when stakeholder engagement worked well and identify areas for enhancing engagement in a PCORI-funded research study of peer-to-peer support of older adults in three communities across the USA.
Qualitative interview study.
Twelve members of the inter-disciplinary research team.
Interviews were conducted via phone, recorded, and transcribed. Transcripts were analyzed using a constant comparative method to identify themes. Transcripts were independently coded; coded themes were discussed by a small group of the research team to check interpretation and clarify meaning. Once initial themes were identified, the interviews and codes were shared with an external consultant who recoded all 12 transcripts and conducted further analysis and interpretation. Documentation from research meetings was used to validate our findings.
Strategies for facilitating meaningful engagement in the partnership, proposal, study design, and planning phase were very similar to community-based participatory research and include the use of community to identify research needs, equitable compensation and leadership, and budgeting for engagement activities. Strategies in the data collection phase include the use of cultural brokers, weekly data calls between the academic PI and imbedded research assistants, and maintaining joint ownership for research.
Major funding institutions (e.g., NIH, PCORI) recognize that community engagement leads to higher quality, more meaningful research (7, 21). Our results support that assumption and in addition, suggest an investment in engagement strategies at the onset of a research project and the use of cultural brokers can greatly contribute to the success of implementing a large, multi-site research project.
2010 年，患者导向的医疗成果研究所（PCORI）成立，旨在资助以患者为中心的研究，让受研究影响的利益相关者有意义地参与其中。因此，研究人员开始关注谁是合适的利益相关者，以及有意义的研究参与是什么样子的（6、8-10）。
了解利益相关者参与良好的方式和时间，并确定在一项由 PCORI 资助的、在美国三个社区开展的老年人同伴支持的研究中加强参与的领域。
定性访谈研究。
跨学科研究团队的 12 名成员。
通过电话进行访谈，录音并转录。使用恒定比较法分析转录本以确定主题。转录本由独立的编码；由研究小组的一小部分对编码主题进行讨论，以检查解释并澄清含义。一旦确定了初步主题，就将访谈和代码与外部顾问共享，该顾问对所有 12 个转录本进行重新编码，并进行进一步的分析和解释。研究会议的文件用于验证我们的发现。
在合作、提案、研究设计和规划阶段促进有意义的参与的策略与基于社区的参与性研究非常相似，包括利用社区确定研究需求、公平补偿和领导力，以及为参与活动预算。在数据收集阶段的策略包括使用文化经纪人、学术首席研究员和嵌入式研究助理之间的每周数据电话会议，以及保持对研究的共同所有权。
主要资助机构（例如 NIH、PCORI）认识到社区参与会带来更高质量、更有意义的研究（7、21）。我们的研究结果支持这一假设，此外，还表明在研究项目开始时投资于参与策略，并使用文化经纪人可以极大地促进实施大型、多地点研究项目的成功。
