206/10/2024

St. Louisans soon will have the opportunity to join a first-of-its kind, national effort to advance medical research and assess how biology, lifestyle, and environment impact health.  

Saint Louis University (SLU) and SSM Health are joining the National Institutes of Health’s (NIH) All of Us Research Program, a historic effort to collect and study data from one million or more people who reflect the diversity of the United States with the goal of elevating the health of all.

Through data shared by participants, the All of Us Research Program provides a vast dataset that researchers can use to accelerate health research and medical breakthroughs, enabling a more individualized approach to prevention, treatment and care. 

People who are interested in participating can choose to join the All of Us Research Program at SLU and SSM Health sites. 

“The goal is to follow a million or more people living in the United States over time to inform precision medicine and to overcome decades of not including people who have been historically underrepresented in medical research,” said Jeffrey Scherrer, Ph.D., professor of family and community medicine and professor of psychiatry and behavioral neuroscience at Saint Louis University School of Medicine, who serves as co-principal investigator for the program at SLU. 

Information collected from participants will be made available to researchers across the country who will be able to access large data sets to advance specific research projects. Already, there are more than 9,000 active research studies using All of Us data. The data and information shared with researchers does not contain individuals names or other information that could directly identify participants.

Funded by the NIH via a subcontract with the All of Us Trans America Consortium (TACH), SLU researchers are launching the program in St. Louis. While the initial funding is for five years, the program is designed to follow participants over the long-term, and researchers expect the initiative to continue for up to ten years or longer. 

“This is exactly the right time to embark on this landmark program because we now have a better understanding of genetics,” said Richard Grucza, Ph.D., professor of family and community medicine and health outcomes research at Saint Louis University School of Medicine and co-principal investigator of the program at SLU.

“We have the technological capability to monitor people over time," Grucza said. "We have electronic health records so we can get data quickly. All of this data will accelerate precision medicine and improve health, taking into account all kinds of contributions to your health. Not just your diet and exercise, but where you live, what kind of lifestyle you have, your profession, your socioeconomic status, your genetic markers.” 

Those who choose to participate in the program will share health and lifestyle information via surveys and their electronic health record and may opt into additional aspects of the program, including providing blood, urine and saliva for lab and DNA tests.

Individuals who opt to participate in genetic testing may choose to see their results over time and learn more about their own genetic history. They can also opt-out at any time and their data will be removed.

“One of the great things about this program is that after people sign up to participate, they can choose to receive a DNA report back,” said Kimberly Enard, Ph.D., associate professor in SLU’s College for Public Health and Social Justice and a co-investigator on the program. “For anybody who gets a result that they may find concerning or hard to understand, they have free access to genetic counselors to talk about their results.” 

Researchers believe that time, money and effort invested in the program now will provide invaluable dividends in the future.  

“Thanks to the inclusion of electronic health records, we’ll be able to see how disease develops and progresses in real time,” said Scherrer, who is also co-director of research for SLU’s Advanced HEAlth Data (AHEAD) Research Institute, a center that addresses public health issues to improve patient health outcomes through data-driven innovation.

“Years from now, we'll have enough data to be able to tailor health care for all different subgroups in America, not just white males, who have traditionally been overrepresented in studies. We'll learn about which treatments work for different people. We’ll also learn if where you live, or the type of work you do, or your family history, changes your health outcomes or indicates a particular treatment.”

The program is a part of the NIH’s effort to advance precision medicine, which approaches health care by focusing on individuals, taking into account environment, lifestyle, family history and genetic makeup. By matching the right treatment to the right person, researchers believe health care can be more effective. 

“This will produce a very rich dataset that will be of interest to everybody from the social sciences to cancer genetics,” said Grucza. “It will really get to individual level differences in risk. For example, there may be groups of people for whom a certain disorder is largely mediated by genetics, whereas for other people it may be largely an environmental issue.”

The future of medicine is laser-focused on addressing and eliminating health disparities.

Kimberly Enard, Ph.D.

One of the central goals of the research program is to tackle health disparities, conditions that remain unacceptably high across many demographics. Enrolling a diverse group of participants is the key to understanding where disparities originate and how to address them.    

“The future of medicine is laser-focused on addressing and eliminating health disparities,” Enard said. “But, it's hard to address health disparities if you have large gaps in data for traditionally underserved and historically marginalized groups, such as Native Americans, African Americans, Arab Americans, those with disabilities, LGBTQIA+ populations, and people living in poverty. These are all groups that have not been well represented in previous studies and who may have different factors that impact their health.” 

For Scherrer, All of Us is an opportunity he and his colleagues have been preparing for. 

“The project is really thrilling because, for the first time, we have the opportunity to leverage big data to pull back the curtain and answer countless questions about every area of human health you can imagine,” Scherrer said. “And, here at SLU, the University has invested in faculty and resources in order to do this work through the establishment of the AHEAD Institute, which was created to enable research with big data sets. 

“We have the faculty and the skill set to leverage this data, in large part, because of this investment.” 

The organizations’ leaders shared their enthusiasm for the initiative. 

“SSM Health is excited to collaborate in the All of Us Research Program,” said Jeremy Fotheringham, RN, MHSA, JD, Academic, St. Louis & Southern Illinois Regional President of SSM Health. “Our commitment to fostering healthier communities begins with a deeper understanding of health disparities and genetics. Partnering with Saint Louis University, alongside the expertise of our academic providers with SLUCare Physician Group, we strive to advance the future of healthcare. 

“As this initiative aspires to unite one million individuals in a diverse health research database, together, we will advance towards a future where knowledge transcends boundaries, fostering a healthier world for all.” 

Christine Jacobs, M.D., dean of Saint Louis University School of Medicine, echoed those sentiments.

“We’re really energized by the potential of this program to make meaningful advances in human health,” said Jacobs. “Along with our partners at SSM Health, we are extremely proud of our researchers and clinicians, and look forward to the launch of this program."

People who are interested in learning more about participating in the All of Us Research Program at the SLU and SSM Health sites can visit https://joinallofus.org/saintlouis or call 314-977-7600.