The All of Us Research Program, supported and overseen by the National Institutes of Health (NIH), is a historic effort to gather longitudinal data from one million or more people living in the United States. The goals of the program are to accelerate medical research and improve health. The Froedtert & MCW health network is one of four organizations in Wisconsin participating in this nationwide effort.
Eligible adults aged 18 or older living in the United States can join the All of Us Research Program. Participants may be able to learn more about their own health and help contribute to an effort that may advance the health of generations to come.
While many programs share one or two characteristics with All of Us, it is the combination of several elements that make this research program unique:
- Participants will reflect the rich diversity of America, including volunteers of many races and ethnicities, age groups, geographic regions, gender identities, sexual orientations, and health statuses.
- Participants are true partners, not subjects, with ongoing opportunities to help shape the program with their input.
- Data will be shared with both researchers and participants.
- As an NIH-funded program committed to open data and science, All of Us will make the data broadly accessible to researchers of all kinds to support thousands of studies across a wide range of different health topics.
- Other large research programs collect limited types of samples or data, often focused on a specific disease. This program will combine many types, including blood and urine samples; physical measurements; electronic health records; and surveys about participants’ health histories, family medical histories, lifestyles and communities. Participants are also able to share their data from Fitbit devices to provide a more complete picture of human health across many conditions. The program will add connections to additional devices and apps in the future.
As of June 2020, All of Us expanded its data collection to seek new insights into COVID-19, leveraging its significant and diverse participant base. It will make data gathered through these activities broadly accessible to approved researchers over time. Analyses may help reveal the origins of entry, spread, and impact of COVID-19 in the United States. The program’s COVID-19 initiatives include:
- Antibody testing. All of Us will test blood samples from 10,000 or more participants who joined the program most recently, starting with samples from March 2020 and working backward until positive tests are no longer found. Antibody tests are generally done with people who do not currently have symptoms, to find out if they had the virus in the past. The tests will show the prevalence of novel coronavirus exposure among All of Us participants and help researchers assess varying rates across regions and communities.
- COVID-19 participant experience survey. This 20- to 30-minute online survey is designed both for participants who have been ill with COVID-19 and those who have not. It includes questions on COVID-19 symptoms, stress, social distancing and economic impacts, to better understand the effects of the COVID-19 pandemic on participants’ physical and mental health. Participants are invited to take the survey each month until the pandemic ends, so researchers can study the effects of COVID-19 over time and better understand how and why COVID-19 affects people differently.
- Electronic health records. More than 200,000 participants have shared their electronic health records with the program so far, offering a rich dataset for analysis. A number of participants have either been diagnosed with COVID-19 or sought health care for related symptoms. The program is working to standardize EHR information to help researchers look for patterns and learn more about COVID-19 symptoms and associated health problems, as well as the effects of different medicines and treatments.
“Collectively, these efforts are an important step toward helping researchers learn more about COVID-19 and its impact on different communities across the United States,” said Kelly Gebo, MD, MPH, All of Us’s chief medical and scientific officer.
All are invited to join this program. Staff members in the Froedtert & MCW health network who have signed up agree that being a part of this program provides a unique and valuable opportunity.
"It is very exciting that I can personally take a part in advancing precision medicine and possibly improving health for those in the future. It was easy to do with the skilled All of Us staff guiding me through the process.” — Shelly Waala, vice president of patient care services and chief nursing officer, Community Hospital Division
"I’m ecstatic to be a part of the All of Us Program! My imprint on the future is sought for the betterment of all, not just myself. It is my duty to serve and care for others as a nurse, but it is also the right thing to do as an inclusive human being. I look forward to potential future breakthroughs in health care and humbled to say I’m a part of it.” — Maria Jostad, BSN, RN, clinic manager, Community Physicians