In a Fragmented Field, New Collaboration Is Changing How We Study Substance Use

A Zoom screen separated Heather Bradley, PhD, from her colleagues as she sat at home, worried. She had lost count of the number of days she had been in her house. The world was thick in the chaos and fear that marked the beginning of the COVID-19 pandemic.

Outside of the concern she felt for family and friends, she also had pressing worries about the people she had been working for years to help—people who inject drugs.

“This is a population that, on average has a very high prevalence of unstable housing and low access to clinical care and to other services,” says Bradley, who is an associate professor in the Department of Epidemiology at the Rollins School of Public Health. “I kept wondering, how are they coping with pandemic-related challenges?” 

Were they receiving health care? Were they able to access safe injection supplies? Were they able to stay on treatment regimens for substance use, HIV, or hepatitis C?

A Field Marked by Gaps

The research field aiming to improve the health of people who inject drugs has long faced substantial barriers. Limited funding, scarce data, a small pool of researchers, and persistent obstacles in recruiting and retaining participants tend to attract a scrappy type of person drawn to challenging work. Bradley is one of those people. 

As Bradley kept pressing her work forward from afar, a question nagged at her: What if working in a relatively small field could be an advantage in this situation?

Bradley had funding from the Centers for Disease Control and Prevention (CDC) through her work as principal investigator with the Coalition for Applied Modeling for Prevention (a CDC-funded cooperative agreement housed at Emory). She realized she knew—tangentially at least—all the people leading large cohort studies that included people who inject drugs. 

“I thought, I wonder if we could try to get everybody to contribute whatever current data they do have on impacts of the pandemic on this population and to agree to co-publish it in one study (which we typically don't do as social scientists),” she says. 

Building a Model for Collaboration 

It was all hands on deck. In 2021, Bradley and colleagues mobilized a dream team of researchers studying people who inject drugs and service providers (13 total cohorts), which included nearly every government-funded research cohort in North America. 

The group met monthly to discuss creating a new data sharing model with standardized indicators across studies and submission of unpublished, current data to a repository. 

Unlike the type of data that is contributed to data warehouses—after research has been published—the collaborative wanted a nimble repository that reflected current data. People who inject drugs face disproportionately high risks for infections like hepatitis C and HIV, making timely and accurate data critical for public health response. Substance use patterns change so rapidly that by the time data are contributed to warehouses post-study closure, they are several years old and no longer reflect the reality of on-the-ground populations. 

To meet this need, the collaborators created a website that allows researchers to submit their hard-won data to collaborate on a meaningful level. They have since published two papers—one on the data sharing model and another on the impacts of the pandemic on the health of people who inject drugs, with a third coming soon.  

Improving Surveillance to Help Underserved Communities, Cure Hepatitis C

The group is currently working on a paper that looks at how different cohorts measure and monitor hepatitis C among their cohorts. By looking for inconsistencies in survey language and laboratory tests, they are seeking to understand:

• How the cohorts could best contribute to the national effort to monitor the burden of hepatitis C among people who inject drugs
• What it might look like to harmonize the way hepatitis C data are collected among NIH-funded cohorts of people who inject drugs in the United States
• Opportunities for integrating an FDA-approved point-of-care test for current hepatitis C infection in the work of the cohorts

“Our work brought together some of the foremost experts in this area,” says Bradley. “We see this model as having great potential for improving health among people who inject drugs and as a potential model for more collaborative data sharing in social sciences/public health more generally.”

What began as a project borne out of social isolation is now a strong example of what researchers can achieve through thoughtful collaboration. The possibilities ahead are endless.