Novak Laurie Lovett, George Sheba, Wallston Kenneth A, Joosten Yvonne A, Israel Tiffany L, L Simpson Christopher, Vaughn Yolanda, Williams Neely A, Stallings Sarah, Ichimura Jabari S, Wilkins Consuelo H
Department of Biomedical Informatics, Vanderbilt University Medical Center, USA.
Department of Community Health Sciences, UCLA Fielding School of Public Health, Los Angeles, CA, USA.
J Patient Exp. 2020 Dec;7(6):1438-1444. doi: 10.1177/2374373520958340. Epub 2020 Sep 21.
Amid increasing interest in improving the patient-centeredness of research, new forms of engagement are emerging that enable researchers to get input from community members on research goals, methods, and implementation. This input often includes stories, which are useful for understanding lived experiences of illness and encounters with health care organizations, and for locating these experiences within larger meta-narratives of specific communities. We analyzed the stories in transcripts of 13 Community Engagement Studios and identified 4 major functions that the stories served in the sessions. Major functions included: (1) establishing mutual understanding, (2) adding expansion and depth, (3) characterizing abstract concepts, and (4) providing context for experience, with the latter being the most frequent. We assert that stories can serve to better communicate the complex contexts of patient experiences, helping to align research priorities and research design with community interests, leading to more patient-centered innovations in clinical practice.
在人们对提高研究的以患者为中心性的兴趣日益浓厚之际，新的参与形式正在出现，使研究人员能够就研究目标、方法和实施从社区成员那里获得意见。这种意见通常包括故事，这些故事有助于理解疾病的生活经历以及与医疗保健组织的接触，并将这些经历置于特定社区的更大元叙事之中。我们分析了13个社区参与工作室的记录中的故事，并确定了这些故事在会议中发挥的4个主要功能。主要功能包括：（1）建立相互理解，（2）增加扩展和深度，（3）描述抽象概念，以及（4）为经历提供背景，其中后者最为常见。我们断言，故事有助于更好地传达患者经历的复杂背景，有助于使研究重点和研究设计与社区利益保持一致，从而在临床实践中带来更多以患者为中心的创新。
