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How to Build + Reach
Online Communities
Through Collaboration
Connecting the Digital Dots:
Yasmin Kloth, MS
Senior Digital Communications Strategist
All of Us Research Program
⦿ How can we be more inclusive in
medical research so that health
approaches can one day be
tailored for the individual?
Importance of Diversity in Research
A Resource for All of Us
The All of Us Research Program
Who We Are
⦿ The cornerstone of the larger Precision Medicine Initiative—led by the NIH
⦿ One million or more volunteers, reflecting the broad diversity of the U.S.
⦿ Data will inform a variety of research studies
The All of Us Research Program
Our Mission and Objectives
5
Nurture
relationships
with one million or more
participant partners, from all
walks of life, for decades
Catalyze a
robust ecosystem
of researchers and funders
hungry to use and support it
Our mission
To accelerate health research
and medical breakthroughs,
enabling individualized
prevention, treatment,
and care for all of us
Deliver the
largest,
richest
biomedical
dataset ever
that is easy, safe,
and free to access
⦿ How can we reach and build trust in
communities previously
underrepresented in medical
research?
Importance of Diversity in Research
Building Bridges
7
Current Consortium Members
DV Network
(Direct Volunteers)
HPO Network
(Health Care Provider
Organizations)
RMCs
California Precision
Medicine Consortium
Illinois
Precision
Medicine
Consortium
New England
Precision
Medicine
Consortium
Trans-American
Consortium for the
Health Care Systems
Research Network
New York City
Precision Medicine
Consortium
Platform
Development
University of Arizona University of Pittsburgh
Southern
All of Us Network
SouthEast
Enrollment Center
All of Us, Wisconsin FQHCs (Federally Qualified Health Centers)
VA
Medical Centers
Communication
& Engagement
Biobank
8
Current Consortium Members
Community Partners
9
The Online + Offline Relationships
Connecting the Digital DotsPhotobyGoaShapeonUnsplash
PhotobyPietroJengonUnsplash
Data, Digital, and All of Us
11
Social Media + Health
e-Patient, e-Provider, e-Researcher
“We find once again that there is a social life of health
information, as well as peer-to-peer support, as people
exchange stories about their own health issues to help each
other understand what might lie ahead.”
--Susannah Fox & Maeve Duggan, Health Online 2013,
Pew Research Center
12
Social Media + Health
e-Patient, e-Provider, e-Researcher
13
Social + Health
All of Us and Social Media
Social + Health
14
Connecting the Digital Dots
Meeting People & Communities Where They Are
16
Connecting with Communities
@NIH #JoinAllofUs Twitter Chat
17
Connecting with Communities
#JoinAllofUs @WebMD Twitter Chat
18
Connecting with Communities
Localize + Amplify
19
Connecting with Communities
Localize + Amplify
https://www.facebook.com/BlackWomensHealthImperative/videos/10156011504815750/
https://www.facebook.com/lulac.national.dc/videos/10159951598135162/
20
Connecting with Communities
Localize + Amplify
21
Connecting with Communities
Localize + Amplify
22
The Offline + Online Relationships
Connecting the Digital Dots
PhotobyPietroJengonUnsplash
PhotobyGoaShapeonUnsplash
⦿ The All of Us Research Program is working to enroll 1M+ people into a large research
cohort
⦿ Engaged and activated patients on digital platforms makes now a prime moment for
this program
⦿ The use of social media by All of Us Consortium organizations and institutions is vital
for meeting communities where they are
23
Summary
Meeting People Where They Are
Sign up for updates:
joinallofus.org
Facebook, Twitter, + Instagram
@AllofUsResearch
#JoinAllofUs
Yasmin.kloth@nih.gov
Questions?
24
Precision Medicine Initiative, PMI, All of Us, the All of Us logo, and “The Future of Health Begins with You” are service marks of the U.S. Department of Health and Human Services.

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Connecting the Digital Dots (J. Kloth)

  • 1. How to Build + Reach Online Communities Through Collaboration Connecting the Digital Dots: Yasmin Kloth, MS Senior Digital Communications Strategist
  • 2. All of Us Research Program
  • 3. ⦿ How can we be more inclusive in medical research so that health approaches can one day be tailored for the individual? Importance of Diversity in Research A Resource for All of Us
  • 4. The All of Us Research Program Who We Are ⦿ The cornerstone of the larger Precision Medicine Initiative—led by the NIH ⦿ One million or more volunteers, reflecting the broad diversity of the U.S. ⦿ Data will inform a variety of research studies
  • 5. The All of Us Research Program Our Mission and Objectives 5 Nurture relationships with one million or more participant partners, from all walks of life, for decades Catalyze a robust ecosystem of researchers and funders hungry to use and support it Our mission To accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us Deliver the largest, richest biomedical dataset ever that is easy, safe, and free to access
  • 6. ⦿ How can we reach and build trust in communities previously underrepresented in medical research? Importance of Diversity in Research Building Bridges
  • 7. 7 Current Consortium Members DV Network (Direct Volunteers) HPO Network (Health Care Provider Organizations) RMCs California Precision Medicine Consortium Illinois Precision Medicine Consortium New England Precision Medicine Consortium Trans-American Consortium for the Health Care Systems Research Network New York City Precision Medicine Consortium Platform Development University of Arizona University of Pittsburgh Southern All of Us Network SouthEast Enrollment Center All of Us, Wisconsin FQHCs (Federally Qualified Health Centers) VA Medical Centers Communication & Engagement Biobank
  • 9. 9 The Online + Offline Relationships Connecting the Digital DotsPhotobyGoaShapeonUnsplash PhotobyPietroJengonUnsplash
  • 10. Data, Digital, and All of Us
  • 11. 11 Social Media + Health e-Patient, e-Provider, e-Researcher “We find once again that there is a social life of health information, as well as peer-to-peer support, as people exchange stories about their own health issues to help each other understand what might lie ahead.” --Susannah Fox & Maeve Duggan, Health Online 2013, Pew Research Center
  • 12. 12 Social Media + Health e-Patient, e-Provider, e-Researcher
  • 13. 13 Social + Health All of Us and Social Media
  • 14. Social + Health 14 Connecting the Digital Dots
  • 15. Meeting People & Communities Where They Are
  • 16. 16 Connecting with Communities @NIH #JoinAllofUs Twitter Chat
  • 19. 19 Connecting with Communities Localize + Amplify https://www.facebook.com/BlackWomensHealthImperative/videos/10156011504815750/
  • 22. 22 The Offline + Online Relationships Connecting the Digital Dots PhotobyPietroJengonUnsplash PhotobyGoaShapeonUnsplash
  • 23. ⦿ The All of Us Research Program is working to enroll 1M+ people into a large research cohort ⦿ Engaged and activated patients on digital platforms makes now a prime moment for this program ⦿ The use of social media by All of Us Consortium organizations and institutions is vital for meeting communities where they are 23 Summary Meeting People Where They Are
  • 24. Sign up for updates: joinallofus.org Facebook, Twitter, + Instagram @AllofUsResearch #JoinAllofUs Yasmin.kloth@nih.gov Questions? 24 Precision Medicine Initiative, PMI, All of Us, the All of Us logo, and “The Future of Health Begins with You” are service marks of the U.S. Department of Health and Human Services.

Editor's Notes

  1. We did not, and cannot do this alone. This is a social network analysis snapshot of May 6 – the day we launched our research program about 15 minutes before we kicked off our online event.
  2. All of Us has made a commitment to share and develop English and Spanish materials