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来源类型 | Report |
规范类型 | 报告 |
DOI | https://doi.org/10.7249/RR2578 |
来源ID | RR-2578-NIH |
Best Practices for Participant and Stakeholder Engagement in the All of Us Research Program | |
Dmitry Khodyakov; Elizabeth Bromley; Sandra Kay Evans; Katharine Sieck | |
发表日期 | 2018-08-17 |
出版年 | 2018 |
页码 | 122 |
语种 | 英语 |
结论 | The authors identified six best practices for engagement:
The authors developed the three Ms of engagement framework for evaluating participant engagement process and its outcomes:
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摘要 | RAND researchers identified best practices for making potential participants aware of the All of Us Research Program (AoURP), enrolling them to participate, and retaining them within the program. The program's goal is to collect long-term survey data, electronic health records, physical measurements, and biospecimens from 1 million U.S. adults to build a diverse data set for health research. The AoURP is an ambitious and innovative research initiative led by the National Institutes of Health with a mission to "revolutionize how we improve health and treat disease." The expectation is that participants will remain involved with the AoURP for at least ten years. The AoURP is a key component of the Precision Medicine Initiative launched by President Barack Obama in January 2015. Precision medicine focuses on prevention and treatment strategies that take individual variability in genes, environment, and lifestyle into account. ,Making potential participants aware of the program, enrolling them, and retaining them over a long period of time will require support from community leaders and clinical champions, as well as diverse engagement teams. Some potential participants are likely to be wary of such a bold national program. Therefore, critical first steps for participant and stakeholder engagement are to explain the program's goals and potential benefits in ways that participants can understand and to nurture an environment of trust with communities, as well as across and within regional medical centers. Because many important aspects of the AoURP are uncertain, engagement staff must know how to talk about these uncertainties. |
目录 |
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主题 | Biomedical Research ; Data Science ; Electronic Medical Records ; Genomic Medicine |
URL | https://www.rand.org/pubs/research_reports/RR2578.html |
来源智库 | RAND Corporation (United States) |
引用统计 | |
资源类型 | 智库出版物 |
条目标识符 | http://119.78.100.153/handle/2XGU8XDN/523603 |
推荐引用方式 GB/T 7714 | Dmitry Khodyakov,Elizabeth Bromley,Sandra Kay Evans,et al. Best Practices for Participant and Stakeholder Engagement in the All of Us Research Program. 2018. |
条目包含的文件 | ||||||
文件名称/大小 | 资源类型 | 版本类型 | 开放类型 | 使用许可 | ||
RAND_RR2578.pdf(639KB) | 智库出版物 | 限制开放 | CC BY-NC-SA | 浏览 | ||
x1534251951676.jpg.p(1KB) | 智库出版物 | 限制开放 | CC BY-NC-SA | 浏览 |
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