What happens after someone leaves the hospital is often overlooked
At a crossroads where medicine meets the long arc of a public health crisis, two researchers in North Carolina have secured federal funding to do what fragmented data has long prevented: follow people with HIV across the full landscape of their care, from hospitalization back into the community. The LINC-NC study weaves together records from three major health systems, 34 hospitals, and statewide surveillance data to illuminate why some patients stay connected to treatment while others quietly disappear from care. It is, at its core, an effort to close a gap that costs lives — and to build the evidence needed to close it equitably, in every county, for every person.
- For years, efforts to reconnect people with HIV to outpatient care after hospitalization have stalled because no single dataset could see the whole picture — until now.
- Fragmented records across competing health systems meant patients could vanish between discharge and follow-up, with no way to know where or why the thread broke.
- Researchers are stitching together electronic health records from UNC, Duke, and Wake Forest/Atrium Health with statewide surveillance data, covering 80% of hospitalized HIV patients across all 100 North Carolina counties.
- Privacy-protecting data-matching allows the team to trace individual care journeys without exposing sensitive information — a technical breakthrough that makes the study's scale possible.
- The project's second phase will bring in voices from patients, providers, and community organizations in the places where the system is most clearly failing or succeeding.
- If the interventions identified prove effective, North Carolina could become a replicable model for the national Ending the HIV Epidemic initiative — turning local data into a national blueprint.
Two researchers at the Institute for Global Health and Infectious Diseases have received a multiyear NIH grant to study what happens to people with HIV after hospital discharge — a moment that has long been a weak link in the chain of care. Sarah Rutstein and Thibaut Davy-Mendez are leading LINC-NC, short for Leveraging Inpatient records to characterize the HIV Care continuum in North Carolina, with the goal of understanding why so many patients fail to reconnect with outpatient HIV care after leaving the hospital.
Previous research has struggled to answer this question because data has always been fragmented — confined to single health systems, limited in time, or too coarse to reveal meaningful patterns. This study takes a different approach, assembling a statewide dataset that combines electronic health records from UNC, Duke Health, and Wake Forest/Atrium Health with North Carolina's HIV surveillance data from 2018 to 2024. Together, these sources cover 34 hospitals and more than 600 care sites across all 100 counties, reaching roughly 80 percent of people hospitalized with HIV in the state. Privacy-protecting matching techniques allow researchers to follow individual patients across these separate systems without compromising their identities.
The power of this approach lies in its continuity — researchers can see what was happening before a hospitalization, what care was delivered during it, and whether the patient successfully re-engaged with HIV treatment afterward. Mapping these trajectories across regions and institutions will reveal where the system holds and where it breaks down. Those findings will shape a second phase in which the team speaks directly with patients, providers, and community organizations in areas where outcomes are notably better or worse.
The implications reach beyond data. Timely linkage to HIV care enables antiretroviral therapy, which improves individual health and reduces transmission. The study is aligned with the federal Ending the HIV Epidemic initiative, which identifies rapid linkage and long-term retention as cornerstones of reducing new infections. Davy-Mendez has emphasized that the goal is practical and equitable — interventions that work in real health systems, across diverse communities. The researchers expect their findings to offer not just answers for North Carolina, but a model other states can follow.
Two researchers at the Institute for Global Health and Infectious Diseases have secured a multiyear grant from the National Institute of Mental Health to study what happens to people with HIV after they leave the hospital—a critical juncture that has long been overlooked in efforts to keep patients engaged with their care.
Sarah Rutstein, an assistant professor of infectious diseases, and Thibaut Davy-Mendez, a public health researcher, received the R01 award to lead a project called LINC-NC, which stands for Leveraging Inpatient records to characterize the HIV Care continuum in North Carolina. The work addresses a persistent problem: despite years of effort to reconnect people with HIV to outpatient care after hospitalization, success rates have remained limited. The reason, researchers say, is that previous studies have been hampered by fragmented data—looking at single health systems, capturing only snapshots in time, or lacking the granular detail needed to understand why some people stay in care while others fall away.
This study takes a fundamentally different approach. The team will assemble a comprehensive, statewide dataset by combining electronic health records from three of North Carolina's largest hospital systems—UNC, Duke Health, and Wake Forest/Atrium Health—with statewide HIV surveillance data collected between 2018 and 2024. The dataset will include information from 34 hospitals that collectively serve roughly 80 percent of people hospitalized with HIV in the state, drawing from more than 600 inpatient and outpatient care sites spread across all 100 counties. Using privacy-protecting data-matching techniques, researchers will be able to track individual patients across these separate systems without exposing sensitive identifying information.
What makes this possible is the ability to see the full arc of a person's HIV care journey: what was happening before hospitalization, what treatment they received during their hospital stay, and whether they successfully reconnected to ongoing HIV care afterward. By mapping these patterns across different hospitals and regions, the researchers will be able to identify where the system is working and where it is failing. Those insights will guide the second phase of the study, in which the team will gather perspectives directly from patients, providers, and community organizations in places where challenges—or successes—are most pronounced.
The stakes are substantial. Linkage to care, defined as completing an initial appointment with an HIV specialist soon after diagnosis or a healthcare encounter, is foundational to the entire HIV treatment cascade. When people access care promptly, they can begin antiretroviral therapy, which not only improves their own health but also reduces the likelihood of transmitting HIV to others. The study aligns with the federal Ending the HIV Epidemic in the U.S. initiative, which identifies rapid linkage and long-term retention as essential strategies for reducing new infections and improving quality of life.
Davy-Mendez emphasized that the goal is to generate evidence that can be translated into practical, scalable interventions—approaches that can actually be implemented in real health systems and that work equitably across different communities. By the time the study concludes, the researchers expect to have identified specific targets and tested interventions that could improve how people with HIV transition from hospital care back into the community. The findings will likely extend beyond North Carolina, offering a model for how other states might approach the same problem.
Notable Quotes
Hospitalization is often a missed opportunity to engage or re-engage people with HIV into outpatient care— Sarah Rutstein, MD, PhD, assistant professor of infectious diseases
By integrating data across multiple health systems and pairing it with insights from patients, providers, and community organizations, this project will identify actionable targets for strengthening linkage to HIV care— Thibaut Davy-Mendez, PhD, MSPH
The Hearth Conversation Another angle on the story
Why does what happens after someone leaves the hospital matter so much for HIV care?
Because that's when people are most likely to disappear from the system. You can have the best hospital care in the world, but if someone doesn't show up for their first outpatient appointment, they're not taking their medications, they're not getting monitored, and the whole benefit of that hospital stay evaporates.
But haven't people been trying to fix this problem for years?
Yes, but they've been working with incomplete pictures. One study might look at a single hospital system. Another might capture data from one moment in time. Nobody had a clear view of what was actually happening across an entire state, across all the different hospitals and clinics.
So what's different about this approach?
They're stitching together records from the three biggest health systems in the state, plus statewide surveillance data, and doing it in a way that protects privacy. For the first time, they can follow a person's care journey before, during, and after hospitalization across 34 hospitals and 600 different care sites.
What will they actually do with that data?
First, they'll identify patterns—where people are falling through the cracks, which hospitals are doing better at keeping people engaged. Then they'll go talk to patients and providers in those places to understand why. That combination of data and human insight is what leads to interventions that actually work.
And if they succeed, what changes?
More people stay in care. More people take their medications consistently. Viral loads drop. Fewer new infections. And it becomes a model other states can copy.