Since its launch in 2015 under President Barack Obama’s administration, the All of Us program has proven to be a game changer in health research.
Unlike research studies that focus on one disease or group of people, All of Us is recruiting one million participants who will provide health information that will become part of a diverse database researchers can tap into instead of researchers spending time recruiting volunteers and creating new data sets over and over for different studies.
It’s an approach that has already proven to accelerate health research and medical breakthroughs, since it began enrolling participants in May 2018. As of this month, the program has 566,000 participants. This month, the University of Kansas Health System announced it is ready to begin enrolling participants in the research program.
“All of Us is an ambitious project that has the potential to revolutionize how we study disease and medicine,” U.S. Health and Human Services Secretary Alex Azar said.
A major goal of the program is to support research that moves health care from far from optimal one-size fits-all medical care to more tailored treatments and prevention strategies in the future.
Who Can Participate?
The KU Health System is part of a Midwest consortium designed to make sure participants from Kansas, Missouri, Iowa and Nebraska are included in the database. The consortium’s goal is to enroll 30,000 participants.
Anyone 18 and older can participate in the research program. You don’t have to be healthy, a specific age, or a specific weight. The goal of the program is to include data from a diverse group of participants.
“Building a diverse participant community will be vital to the success of All of Us, so we can address the many pressing health conditions that disproportionately affect underrepresented communities,” said Dara Richardson-Heron, M.D., chief engagement officer of the All of Us Research Program. “The All of Us Research Program has the potential to help researchers better understand and begin chipping away at health disparities so that everyone can benefit from better health, better health care and exciting new breakthroughs.”
Participants are asked to share different types of health and lifestyle information, including online program participants will share information over many years in a variety of ways, through surveys, electronic health records (EHRs), physical measurements, blood and urine samples and wearable technologies. The Information is stripped of any personal identifiers.
The surveys will cover a range of topics to learn more about participants’ overall health and habits and where they live and work. The EHR data will offer useful information related to medical histories, side effects and treatment effectiveness.
At different times over the coming months and years, some participants will be asked to visit a local partner site to provide blood and urine samples and to have basic physical measurements taken, such as height and weight. To ensure that the program gathers information from all types of people, especially those who have been underrepresented in research, not everyone will be asked to give physical measures and samples.
Some participants may be invited to join follow-up research studies, including clinical trials.
In addition to the data from surveys, electronic health records, physical measurements and Fitbit devices, the data also includes genome sequences that are used to develop personalized health-related DNA results for participants. So far, more than 100,000 participants have received one or more of these reports detailing whether they have an increased risk for specific health conditions or how their body might process certain medications.
These health-related DNA results are part of the program’s commitment to share information and return value to participants, while also making their data broadly available for research use.
Researchers and Data
Ultimately, the All of Us Research Program will be a rich and open data resource for researchers and scientists. Researchers of all types, from citizen scientists to investigators in academia and industry, may request free access to the data, which will be de-identified to protect participant privacy.
More than 5,000 researchers have registered to use the All of Us Researcher Workbench. Registered researchers have access to an expanded set of tools to use in working with available data types.
“Now, through a partnership with participants, researchers, and diverse communities across the country, we are seeing incredible progress towards powering scientific discoveries that can lead to a healthier future for all of us,” said Josh Denny, M.D., M.S., chief executive officer of the All of Us Research Program.