‘All of Us Journey’ aims to bring personalized approach to health care

All week long, UB faculty, staff, students and members of the broader community have been stopping in at the “All of Us Journey’s” tents, tables and the big RV parked outside Abbott Library on the South Campus.

It’s all part of the huge, National Institutes of Health-funded All of Us research project, an ambitious, nationwide effort to gather health data from 1 million — or more — people living in the U.S. The goal is to change health care from a general, “one-size-fits-all” approach to precision medicine, a personalized approach that takes into account how individuals’ biology, family health history, lifestyle and environment all interact to impact their health.

“The goal is to create a large dataset from a diverse group of Americans,” explained Jocelyn Swick-Jemison, data services librarian for the health sciences collections in Abbott. “Diverse datasets are important for researchers in order to work against health inequities and social determinants of health, and to determine the best public health and personal health solutions for specific communities.”

The All of Us Journey mobile tour’s stop at UB was organized by the UB Libraries, specifically through the efforts of Ophelia Morey, the unit’s community outreach coordinator. Funding was provided through an NIH contractor.

People who stop by can share their health information anonymously and get feedback on their ancestry, traits and certain health-related DNA results that they can then share with their health care providers.

Christopher Cohan, SUNY Distinguished Teaching Professor in the Department of Pathology and Anatomical Sciences, Jacobs School of Medicine and Biomedical Sciences, stopped by on Monday. He said he appreciated the opportunity to help establish a database of medical data that could be used to explore health trends in the population.

“I also was excited to receive information about myself and my DNA,” he said.

Cohan explained the process: There’s an extensive questionnaire, part of which can be completed at home, as well as a sample collection that people can take part in if they choose. The questionnaire can be filled out with iPads in the tents. People then can proceed to the mobile van, where they can, if they wish, donate blood and urine samples, as well as height and weight information.

“Overall, it was a good experience, with valuable benefits for me and for research on health data in this country,” he said, adding that after he mentioned it to his wife, she participated the following day.

In operation since 2017, All of Us is on track to gather the health data from 1 million individuals. So far it has collected information from nearly 800,000 people, and received 563,000 biological samples. Those samples are sent to the Mayo Clinic, the biobank, every day within 24 hours.

All health information and biological samples are deidentified and anonymous.

“The goal is, how do we make medicine better for future generations?” said Brave De La Cruz, the All of Us tour manager who is on campus this week.

“It’s a huge health equity issue,” noted Jennifer Surtees, professor of biochemistry who studies genetics, who stopped by the exhibit on Tuesday. She noted that without health information from the entire population, researchers and clinicians trying to make predictions about health risks are at a major disadvantage.

“Efforts like these will ultimately increase the diversity within our national genome databases, 80% of which are from folks of European descent,” she explained. “There is tremendous genetic diversity that we are missing. This limits our understanding of the genetic contribution to any number of human diseases and conditions, and our ability to serve underrepresented communities. It also limits our understanding of our own history.”

Surtees and Jamal Williams, assistant professor in the Department of Psychiatry, have been involved in significant community outreach programs through UB’s Genome, Environment and Microbiome Community of Excellence and the Community Health Speaks initiative through the Department of Psychiatry, both of which seek to educate underrepresented groups about genomics and health.

The All of Us Journey visit to UB runs through 4 p.m. May 3 on the South Campus. UB departments and community-based organizations also have been on-site throughout the week, providing giveaways, including food vouchers for the UB food truck and Harriman’s Cafe.