Communicating research findings as a return of value to All of Us Research Program participants: insights from staff at Federally Qualified Health Centers.
{"title":"Communicating research findings as a return of value to All of Us Research Program participants: insights from staff at Federally Qualified Health Centers.","authors":"Kathryn P Smith, Jenn Holmes, Jennifer Shelley","doi":"10.1093/jamia/ocae207","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>Research participants value learning how their data contributions are advancing health research (ie, data stories). The All of Us Research Program gathered insights from program staff to learn what research topics they think are of interest to participants, what support staff need to communicate data stories, and how staff use data story dissemination tools.</p><p><strong>Materials and methods: </strong>Using an online 25-item assessment, we collected information from All of Us staff at 7 Federally Qualified Health Centers.</p><p><strong>Results: </strong>Topics of greatest interest or relevance included income insecurity (83%), diabetes (78%), and mental health (78%). Respondents prioritized in-person outreach in the community (70%) as a preferred setting to share data stories. Familiarity with available dissemination tools varied.</p><p><strong>Discussion: </strong>Responses support prioritizing materials for in-person outreach and training staff how to use dissemination tools.</p><p><strong>Conclusion: </strong>The findings will inform All of Us communication strategy, content, materials, and staff training resources to effectively deliver data stories as return of value to participants.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":null,"pages":null},"PeriodicalIF":4.7000,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of the American Medical Informatics Association","FirstCategoryId":"91","ListUrlMain":"https://doi.org/10.1093/jamia/ocae207","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"COMPUTER SCIENCE, INFORMATION SYSTEMS","Score":null,"Total":0}
引用次数: 0
Abstract
Objectives: Research participants value learning how their data contributions are advancing health research (ie, data stories). The All of Us Research Program gathered insights from program staff to learn what research topics they think are of interest to participants, what support staff need to communicate data stories, and how staff use data story dissemination tools.
Materials and methods: Using an online 25-item assessment, we collected information from All of Us staff at 7 Federally Qualified Health Centers.
Results: Topics of greatest interest or relevance included income insecurity (83%), diabetes (78%), and mental health (78%). Respondents prioritized in-person outreach in the community (70%) as a preferred setting to share data stories. Familiarity with available dissemination tools varied.
Discussion: Responses support prioritizing materials for in-person outreach and training staff how to use dissemination tools.
Conclusion: The findings will inform All of Us communication strategy, content, materials, and staff training resources to effectively deliver data stories as return of value to participants.
期刊介绍:
JAMIA is AMIA''s premier peer-reviewed journal for biomedical and health informatics. Covering the full spectrum of activities in the field, JAMIA includes informatics articles in the areas of clinical care, clinical research, translational science, implementation science, imaging, education, consumer health, public health, and policy. JAMIA''s articles describe innovative informatics research and systems that help to advance biomedical science and to promote health. Case reports, perspectives and reviews also help readers stay connected with the most important informatics developments in implementation, policy and education.