From Madison Mallards games to Dane Dances, from the city’s Juneteenth celebrations to the Marquette Waterfront Festival, a booth promoting something called the “All of Us” project has been popping up at events around town.
The University of Wisconsin-Madison staffers running the booth are on a mission: To convince the Madison public to share personal medical information — electronic medical records, blood sample data, genetic maps — with the National Institutes of Health in the name of advancing medical research.
The UW-Madison, the Medical College of Wisconsin and the Marshfield Clinic are spearheading a statewide effort to help the NIH build a national biomedical database of unprecedented depth and scope. The platform could yield new insights about health and disease, and help clinicians develop personalized treatments for patients.
Dorothy Farrar-Edwards, a professor of kinesiology and medicine at the UW-Madison and director of the Collaborative Center for Health Equity, is a principal investigator behind the Wisconsin All of Us initiative. She said the goal is to sign up 100,000 people from around Wisconsin, about 2 percent of the state’s population.
“Some people sign up for altruism,” said Farrar-Edwards. “Or they have a personal concern that affects them, people they know and love.”
Farrar-Edwards said she’s agreed to share her own medical data in large part because of her family, which has a history of heart problems. Her brother died from a heart attack at 43, she said.
“I want to know, what is it about my family that puts them at such risk?” she said. “I have four children, and grandchildren. I want them to know … why is heart disease such a prominent problem?”
By tapping into the database being built by the NIH, researchers around the U.S. would be able to conduct research on a wide range of issues — on risk factors for heart disease, why certain groups are at higher risk of cancer, or any one of thousands of research questions. The NIH says that such research would in turn drive advances in what’s known as “precision medicine” — the tailoring of medical care based on an individual patient's identity, lifestyle or genetics.
By signing up for the All of Us initiative, a person agrees to share their electronic medical records on an ongoing basis, said Farrar-Edwards. They also answer some questionnaires, and provide a blood and urine sample. Participants could also further volunteer to provide some saliva for the purposes of sequencing their genome.
The NIH can create a database with the information therein on demography, genetics, and medical history — and thanks to the urine samples, even environmental information. Farrar-Edwards said that whether a farmer has been exposed to pesticides would be evident in that data, for example.
Starting early next year, researchers will be able to submit requests to the NIH for datasets for their research. Given the size of those datasets, Farrar-Edwards said that advanced computing tools will be key.
“This is where artificial intelligence and machine learning comes into play,” she said. “It really allows these really sophisticated algorithms to detect problems that we don’t otherwise see.”
Farrar-Edwards said research projects that previously took decades would be feasible in far less than that thanks to All of Us. As a specialist in Alzheimer’s disease research, she said she can appreciate the time savings all too well.
“It took us 30 years to collect enough samples with clinical information to do the first study on Alzehimer's risk in African-Americans,” she said.
Farrar-Edwards said that a major focus of the recruitment effort she’s leading is to ensure the representation of groups that have historically been missing in medical data — people from rural areas, people of color and those with disabilities, for example. She said that her team has been forging partnerships with groups representing those populations, and has been in the field holding health education and screening events.
“People sign up because we’re invested in the community,” she said.
Farrar-Edwards said that while she didn’t have Wisconsin’s enrollment numbers to share, 155,000 have signed up nationally. The enrollment initiative will take place over a five-year time window, she said.
More information on enrollment and the initiative can be found at allofus.nih.gov.