Unertl Kim M, Schaefbauer Chris L, Campbell Terrance R, Senteio Charles, Siek Katie A, Bakken Suzanne, Veinot Tiffany C
Department of Biomedical Informatics, Vanderbilt University School of Medicine, Nashville, Tennessee, USA
Department of Computer Science, University of Colorado Boulder, Boulder, Colorado, USA.
J Am Med Inform Assoc. 2016 Jan;23(1):60-73. doi: 10.1093/jamia/ocv094. Epub 2015 Jul 30.
We compare 5 health informatics research projects that applied community-based participatory research (CBPR) approaches with the goal of extending existing CBPR principles to address issues specific to health informatics research.
We conducted a cross-case analysis of 5 diverse case studies with 1 common element: integration of CBPR approaches into health informatics research. After reviewing publications and other case-related materials, all coauthors engaged in collaborative discussions focused on CBPR. Researchers mapped each case to an existing CBPR framework, examined each case individually for success factors and barriers, and identified common patterns across cases.
Benefits of applying CBPR approaches to health informatics research across the cases included the following: developing more relevant research with wider impact, greater engagement with diverse populations, improved internal validity, more rapid translation of research into action, and the development of people. Challenges of applying CBPR to health informatics research included requirements to develop strong, sustainable academic-community partnerships and mismatches related to cultural and temporal factors. Several technology-related challenges, including needs to define ownership of technology outputs and to build technical capacity with community partners, also emerged from our analysis. Finally, we created several principles that extended an existing CBPR framework to specifically address health informatics research requirements.
Our cross-case analysis yielded valuable insights regarding CBPR implementation in health informatics research and identified valuable lessons useful for future CBPR-based research. The benefits of applying CBPR approaches can be significant, particularly in engaging populations that are typically underserved by health care and in designing patient-facing technology.
我们比较了5个应用基于社区的参与性研究（CBPR）方法的健康信息学研究项目，其目的是扩展现有的CBPR原则，以解决健康信息学研究特有的问题。
我们对5个不同的案例研究进行了跨案例分析，这些案例有一个共同要素：将CBPR方法整合到健康信息学研究中。在查阅了出版物和其他与案例相关的材料后，所有共同作者参与了以CBPR为重点的协作讨论。研究人员将每个案例映射到一个现有的CBPR框架，分别检查每个案例的成功因素和障碍，并确定案例之间的共同模式。
在这些案例中，将CBPR方法应用于健康信息学研究的益处包括：开展更具相关性、影响更广泛的研究，更多地接触不同人群，提高内部效度，更快地将研究转化为行动，以及人员的发展。将CBPR应用于健康信息学研究的挑战包括需要建立强大、可持续的学术-社区伙伴关系，以及与文化和时间因素相关的不匹配。我们的分析还发现了一些与技术相关的挑战，包括需要界定技术产出的所有权以及与社区伙伴建立技术能力。最后，我们创建了几个原则，扩展了现有的CBPR框架，以专门解决健康信息学研究的要求。
我们的跨案例分析产生了关于在健康信息学研究中实施CBPR的宝贵见解，并确定了对未来基于CBPR的研究有用的宝贵经验教训。应用CBPR方法的益处可能是巨大的，特别是在接触那些通常未得到充分医疗服务的人群以及设计面向患者的技术方面。
Zotero 插件