NIH’s All of Us Research Program database aims to improve care


When Dr. Jeffrey Whittle graduated from medical school in 1984, colleagues told him he’d soon be using patients’ genetic information to manage their care. By studying a patient’s genome, or entire set of DNA, in conjunction with other factors such as lifestyle or environment, clinicians would be able to determine which medication is best suited to treat their cholesterol, diabetes or hypertension.

“I’ve been a doctor for almost 40 years now, and I am still not using genetic information in my everyday practice,” said Whittle, a primary care doctor and inpatient hospitalist at Clement J. Zablocki Veterans’ Administration Medical Center and a professor of medicine at the Medical College of Wisconsin, both in Milwaukee.

Although physicians use genetic data to help inform treatment in some specialties, such as oncology, the practice is not yet routine in general medicine. Whittle serves as one of the Medical College of Wisconsin’s principal investigators for the National Institutes of Health’s All of Us Research Program, which works to bring the scenario his colleagues described closer to reality. The precision medicine initiative aims to build a large-scale database for researchers by performing whole-genome sequencing on a diverse cohort of participants and conducting longitudinal follow-ups via surveys. One of its eventual goals is to enable clinicians to better tailor healthcare to each patient’s needs.

More than 60 healthcare organizations and academic institutions are enrolling participants, sharing electronic health records and collecting biosamples for the All of Us initiative. As the program nears its five-year mark, researchers are beginning to use the data to publish studies with potential clinical implications. But stakeholders say All of Us needs the long-term commitment of participants, partner organizations and researchers to reach its full potential.

 

An ambitious target

All of Us, which opened to participants nationwide in 2018, aims to enroll 1 million or more people by 2028. Its goal is to develop a cohort where 75% of participants are from historically underrepresented groups in medical research, as defined by the NIH with input from the National Institute on Minority Health and Health Disparities and other stakeholders. Although the program said it does not have specific targets for enrollment numbers within demographics, representatives said it’s seeking participants from socioeconomically disadvantaged populations, rural areas and the LGBTQ community. It also strives for half of the 75% to comprise members of racial or ethnic minority groups.

“Many research studies have focused mainly on Caucasian and European descent individuals, and we really wanted to make sure that we were actually going to be coming up with discoveries and potential cures for everyone, and not just a one-size-fits-all based on research that was done on just one tiny bit of the population,” said Sheri Schully, deputy chief medical and scientific officer for All of Us.

More than 420,000 people have agreed to share electronic health records, provided blood or urine samples, given physical measurements like hip-waist ratio and completed three initial surveys. The agency is seeking to draw people into the cohort from the upper Midwest, particularly rural areas.

The NIH also aims to allow researchers to consider non-clinical factors. In addition to the core surveys inquiring about basic demographics, lifestyle and overall health, all participants are periodically offered the chance to complete other questionnaires, geared toward creating a more holistic understanding of wellness.

Joyce Bell Winkler, a retired registered nurse and the former principal investigator for All of Us at Eau Claire Cooperative Health Center in Columbia, South Carolina, helped prepare a survey launched in November 2021 that asked participants about various social and environmental concerns. She said the goal was to show how access to housing, transportation and jobs drives health outcomes.

“So much of what people think about their health is in one dimension,” Winkler said.



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