The All of Us Research Program: The future of health begins with you Dr. Dara Richardson-Heron Chief Engagement Officer and Scientific Executive, All of Us Research Program
Polling Question We are interested in understanding how familiar you already are with precision medicine. We want to know what kind of background you have and how we can increase your knowledge to best work together. ⦿ On Screen: How familiar are you with precision medicine? • Not familiar • Somewhat familiar • Very familiar 2
precision medicine: the right treatment for the right person at the right time 2 3
The Cost of Imprecise Medicine Patients Providers Researchers ⦿ ⦿ ⦿ Health care is often targeted to Not enough research to draw Enormous time and cost spent the average patient, not the on for clinical evidence, building IT systems vs. doing individual especially in diverse research populations ⦿ ⦿ Health problems can take years Siloed data resources and funding ⦿ to unravel, with significant trial Medical records scattered in opportunities and error different places ⦿ Challenges acquiring large sample ⦿ Not enough time to analyze one sizes patient at a time ⦿ Slow translation of data into knowledge 4
Polling Question We are interested in understanding how familiar you already are with the All of Us Research Program. We want to know what kind of background you have and how we can increase your knowledge to best work together. ⦿ On Screen: How familiar are you with the All of Us Research Program? • Not familiar • Somewhat familiar • Very familiar 2
What is the All of Us Research Program? ⦿ Rich, Longitudinal Resource : Deliver a national resource of deep clinical, environmental, lifestyle & genetic data from 1 million participants who have consented & are engaged to provide data on an ongoing, longitudinal basis (10+ years!) ⦿ Diversity of Participants : Reflect the broad diversity of the U.S. — all ages, races/ ethnicities, sex, gender, SES, geographies, & health status — by over-recruiting those underrepresented in biomedical research ⦿ Diversity of Researchers : Build the tools & capabilities that make it easy for researchers from community scientists to premier university labs to make discoveries using the data & biosamples and through ancillary studies with the cohort 5
return of results data transfer and storage data access and use enrollment and data collection 6
Two Methods of Enrollment DIRECT VOLUNTEERS HEALTH CARE PROVIDER ORGANIZATIONS 7
Potential Activities Asked of Participants Enroll, Consent Answering Physical Provide Wearables and and Authorize EHR Surveys Measurements* Biosamples* Digital Apps • • • • • Recruiting 18+ Three initial Blood pressure Blood (or saliva, if Share data from years old initially; surveys: blood draw is wearable fitness • BMI plan to include The Basics, unsuccessful) devices, starting • Heart rate children in 2019 Overall Health with FitBit • Urine specimen • & Personal Habits Height • • Online, interactive Share data about • Biosamples will be • • consent Additional surveys mood & cardio- Hip circumference stored at the will be released on respiratory fitness • program’s biobank • Includes Waist an ongoing basis. through integrated authorization to circumference apps share Electronic • Weight • Health Record More integrations (EHR) data to come *Based on diverse *Based on diverse Coming soon sampling and capacity sampling and capacity 7 9 Pilots under development: richer EHR data, health apps, fitness wearables, and return of genetic info
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All of Us Research Program Core Values Participation is open to all. 1. Participants reflect the rich diversity of the U.S. 2. Participants are partners. 3. Trust will be earned through transparency. 4. Participants will have access to their information. 5. Data will be accessed broadly for research purposes. 6. Security and privacy will be of highest importance. 7. The program will be a catalyst for positive change in research. 8. 10
The All of Us Approach to Participation Participants in the All of Us Research Program will be true partners — not patients — in the research process. ⦿ Involved in program development: • What data we collect • What lab analyses we do • What research is conducted • How data is returned 11
Trust will Trust will be earned through be earned through robust engag robust engagement ement and full transparen full transparency cy. 12
Disenfranchisement and Historical Abuses 13 14
Underrepresented in Minorities make up 38% 38% biomedical research: populations include of the U.S. population. dimensions of race and ethnicity, as well as Minority population will rise to over 56% 56% age, sex, gender, sexual orientation, of overall population. income, education, Minority enrollment in clinical trials <10% 10% geography, access to care and disability. 14
Lack of Diversity in Biomedical Research can Impact Public Health “Diversity in science is science done well. You need diversity in the research, diversity in who is being studied and diversity in the people doing the science. Otherwise you become an echo chamber – everyone looks and sounds just like us." - Sam Oh, PhD, MPH, epidemiologist and researcher at UCSF Center for Genes, Environment and Health. Source: UCSF News Center; UCSF 15
Polling Question Now that you’re more familiar with the connections between local, public health and precision medicine, we would like to understand if precision medicine connect to any current effort of you or your health departments. Please indicate if you believe that precision medicine might have implications for the work of you or your health department as noted below: ⦿ On Screen: Precision medicine has implications for my work. • Agree • Disagree • Unsure 16
The All of Us Approach to Diversity Reflecting the country’s rich diversity to produce meaningful health outcomes for communities historically underrepresented in biomedical research. ⦿ Develop a national network of Health Care Provider Organizations (HPOs) with incentives & methods to reach most diverse people & places ⦿ Create an innovative network of Direct Volunteer partners to reach at least 90% of where all people live, within 20-45 minutes ⦿ Build a network of national & local Community Partners to help build lifelong, trusted relationships with key communities & areas in the country ⦿ Drive programs that lead the way for diverse communities to participate 17
All of Us Research Program Consortium PARTICIPANT BIOBANK DATA AND RESEARCH TECHNOLOGY CENTER SYSTEMS CENTER Repository for processing, storing Big data capture, cleaning, curation, & sharing biosamples (35+M vials) Web and phone-based platforms & sharing in secure environment for participants Vanderbilt, Verily, Broad Institute Mayo Clinic Vibrent Health COMMUNICATIONS & HEALTHCARE PARTICIPANT CENTER / COMMUNITY NETWORK PROVIDER ORGS DV NETWORK NETWORK Communications, marketing & design Direct volunteer participant enrollment, expertise; engagement coordination & digital engagement innovation & HPOs with clinical & scientific expertise, community partners network consumer health technologies enrollment & retention of participants Wondros, HCM, 29 community partner Scripps Research Institute 30+ regional medical centers, FQHCs, organizations, and future awards to (with multiple partners) VA, and future awards to grow network grow network 18
All of Us Consortium Members DV Network Biobank (Direct Volunteers) RMCs HPO Network Illinois New England Trans-American (Health Care Provider Precision Precision Consortium for the New York City Organizations) California Precision Medicine Medicine Health Care Systems Precision Medicine Southern SouthEast Medicine Consortium Consortium Consortium Research Network Consortium All of Us Network Enrollment Center VA FQHCs (Federally Qualified Health Centers) Medical Centers All of Us , Wisconsin University of Arizona University of Pittsburgh Platform Communication Development & Engagement
All of Us Community and Provider Partner Network 21
All of Us Journey 2017-2018 2018-2019 22
Partnership Between All of Us and NLM 21 23
The promise of The promise of All of Us All of Us for participants for participants, , health care providers and researchers. health care providers and researchers. 23
What is the Promise for Participants? ⦿ An opportunity to fight disease and improve the health of future generations. ⦿ The opportunity to be part of a movement to make our health care more precise, more personal and more effective. ⦿ The opportunity to ensure that your community is included in the studies that may lead to new understanding and new treatments. ⦿ An opportunity to learn some of your own health indicators and get your own data. 24 25 This is a long-term relationship and the value to participants (and researchers) will grow over time.
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