G2TT
来源类型Report
规范类型报告
DOIhttps://doi.org/10.7249/RR2578
来源IDRR-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:

  • Expand existing community partnerships to build awareness of precision medicine and prepare community members for considering enrollment in the AoURP.
  • Foster a spectrum of leadership support to identify well-placed allies who can help with participant engagement.
  • Engage a mix of study champions by involving physicians, other clinical personnel, community members, and enrolled participants.
  • Make precision medicine relevant to participant and community priorities by tailoring and personalizing messages about the AoURP.
  • Build an engagement team with diverse expertise by hiring staff with marketing, customer care, or public relations experience who also understand community priorities and know the clinical sites where recruitment takes place.
  • Be prepared to talk about uncertainties related to the evolving nature of the AoURP.

The authors developed the three Ms of engagement framework for evaluating participant engagement process and its outcomes:

  • This framework distinguishes between metrics, markers, and mechanisms of engagement.
  • Metrics are counts and descriptions of what was done to engage participants.
  • Markers are the outcomes or benefits that engagement in the AoURP may bring.
  • Mechanisms are hypotheses that link metrics and markers and try to explain how engagement activities yielded the desired outcomes.
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
  • Chapter One

    Introduction

  • Chapter Two

    Defining Best Practices and Outcomes of Engagement

  • Chapter Three

    Laying the Foundation

  • Chapter Four

    Leading by Example

  • Chapter Five

    Capitalizing on Health Care Infrastructure

  • Chapter Six

    Tailoring and Personalizing Communication

  • Chapter Seven

    Building and Nurturing Engagement Teams

  • Chapter Eight

    Dealing with Uncertainty

  • Chapter Nine

    Markers of Engagement Success

  • Chapter Ten

    Three Key Recommendations for Participant and Stakeholder Engagement

  • Appendix

    Research Methods

主题Biomedical Research ; Data Science ; Electronic Medical Records ; Genomic Medicine
URLhttps://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
个性服务
推荐该条目
保存到收藏夹
导出为Endnote文件
谷歌学术
谷歌学术中相似的文章
[Dmitry Khodyakov]的文章
[Elizabeth Bromley]的文章
[Sandra Kay Evans]的文章
百度学术
百度学术中相似的文章
[Dmitry Khodyakov]的文章
[Elizabeth Bromley]的文章
[Sandra Kay Evans]的文章
必应学术
必应学术中相似的文章
[Dmitry Khodyakov]的文章
[Elizabeth Bromley]的文章
[Sandra Kay Evans]的文章
相关权益政策
暂无数据
收藏/分享
文件名: RAND_RR2578.pdf
格式: Adobe PDF
文件名: x1534251951676.jpg.pagespeed.ic.F9Dh0q4inV.jpg
格式: JPEG

除非特别说明,本系统中所有内容都受版权保护,并保留所有权利。