Researchers of St. Louis are asking for residents’ help in building a national medical database

Health researchers at St.

SSM Health and the University of St. The initiative was created in 2015 with the goal of recruiting 1 million people to share their medical information nationwide.

The large-scale project aims to collect data from a diverse group of people. “In the US, participants in health surveys and clinical trials are typically white,” said SLU professor and co-investigator Kimberly Enard of health management and policy.

“Once you get those markers and understand how they play in particular with some of the social determinants of health, that really leads to an ability to provide better treatments,” she said.

The nationwide project collects data such as where people live, their race and health history. Participants fill out a survey and can share their medical records or donate blood or other samples.

This data, stripped of names and other identifying information, is added to a research cloud that researchers, drug developers and other scientists can use.

According to the initiative’s website, “registered researchers can access data from surveys, genomic analyses, electronic health records, physical measurements and wearables to study the full range of factors influencing health and disease “.

“Because certain groups are underrepresented in medical research, the therapies that are available to us when we get sick and that will be available to our children and family members are not as accurate,” Enard said.

For example, people of color have worse health outcomes for many chronic diseases, she said. Better genetic information can help therapies work better for people with those diseases.

The massive size of the database will better represent the demographics of the United States, said SLU medical school professor Rick Grucza.

“We have such a diverse population that we really want to make sure everyone is represented in this study, and the large study size helps us achieve that,” he said.

The data can be used not only to study potential medical treatments, but also, because health records are shared, to see who has received treatment for alcohol use disorder and other problems.

“I saw letters [based on the data] about who receives drug treatment and who does not. So we can see health disparities in getting treatment, [and] we can look at the results of the treatment,” said Grucza.

Researchers using the database can also look at health disparities between urban and rural patients, or patients with different income levels or differences in childhood backgrounds, he said.

Some scientists have raised concerns that the initiative oversimplifies how race and genetics are linked.

Brett Maricque, a professor of genetics at the University of Washington School of Medicine and co-investigator in the Black Genome Project, said he appreciates the All of Us project’s goals to create a database more representative of the nation’s population. He enrolled himself in the program.

But he also warned that biological data related to race and ethnicity could be misused by white supremacists and others motivated to prove that one race is superior to another.

“I think in principle sequencing more people’s genomes could have super positive effects on people’s health,” Maricque said. “[But] if we don’t really grapple with the history and contemporary racism that’s built into biomedical research…we may end up doing more harm than we think.”

Studies that take race into account should also consider how race interacts with social determinants of health, including where people live and social mores, he said.

The project is also an opportunity for researchers to learn more about local communities and how they view their health.

“A DNA kit comes in the mail, you take the surveys online,” Maricque said. “I think there’s still a missing piece of the puzzle, which is generating human engagement and allowing different voices to contribute to the project’s progress.”

Enard said that St. Louis provides an excellent opportunity to recruit patients not typically found in study databases.

“We understand that this is not the easiest thing to do because there is a lot of history about participating in research,” she said, referring to the country’s history of conducting medical experiments on people of color without their consent. “We’re able to do community-engaged work and build trust in the community, let people know about the study and they can figure out how to participate.”

The effort is starting with flyers, flyers and community events to spread the word.

“A lot of times people say it’s challenging to get participants of color,” Enard said. “Well, a lot of people say, ‘Well, you didn’t ask!’ So I think we have to make sure we’re asking people to participate.”