Linking health care and social services data for impact

By Rachel George, Ph.D., Sydney Idzikowski, Carlene Mayfield, Ph.D., and Pooja Palmer

The Charlotte Regional Data Trust brings together data that typically exist in silos to better understand the complicated issues our communities face.

For instance, when you go to the doctor, information is collected and stored about you and your needs. But, the doctor is not the only entity that impacts your health; your housing environment and food supports also play a role, and information about these other elements of your life exist in separate systems. By combining information, a more comprehensive understanding of health can be obtained to inform effective decision-making about your care and desired outcomes.

We know that siloed data, particularly between health care and social services, make it difficult to address health disparities because health care systems don’t often have a comprehensive understanding of patients outside of the health care system.  And social service providers rarely have robust health information. That’s where the Data Trust serves as a trusted third-party entity to link data while protecting personal information.

The success of the Data Trust is driven by the partner organizations who share data. One such partner, Atrium Health – part of Advocate Health, began working with the Data Trust in 2019 as a part of the Housing First Charlotte-Mecklenburg research initiative and again in 2023 in response to COVID-19.  Realizing the ways in which the illness exacerbated health disparities, especially among racial and ethnic minorities and those with chronic health conditions, catalyzed a partnership between Atrium Health and the Data Trust to more holistically  study the impacts of COVID-19 for high-risk and/or underserved patients in our community.

“Collective participation in these ecosystems is what makes the work meaningful; each partner contrib[utes] to a more complete, actionable picture,” said Carlene Mayfield, the AVP of Impact Evaluation & Grants Management for Advocate Health, an integrated data enthusiast and a Data Trust board member. “As health care leaders, this is how we operationalize whole-person care, not as an aspiration, but as a data-informed approach that enables more effective and coordinated responses to community needs.” 

For two years, the Data Trust and Atrium Health worked through the necessary legal and compliance processes to establish an ongoing data-sharing partnership that made it possible for Atrium Health to share individual-level patient data with the Data Trust to link with social services data. The data was then deidentified for approved research. These activities set the stage to expand what was possible for the hospital to understand about their own patients, as well as open up a process for other uses of hospital data. 

“As a health care industry, we are appropriately cautious about identified data-sharing,” said Mayfield.  “Patients entrust us with their information, and it is our responsibility to preserve their privacy and dignity as a core part of our culture. At the same time, using the best available data, with the right safeguards and governance, is also how we serve them.”

Currently there are four ongoing projects with Atrium Health and the Data Trust. They  study a range of diverse subsets of patient populations and represent different applications of linked hospital and social service data. The projects include:

Integrating Health Care and Social Service Data to Evaluate the Effect of COVID-19 on Cancer Disparities for Underserved Patients – Project Lead:  Carlene Mayfield

• Patient population: Adult patients attending safety-net community clinics during the pre-pandemic/baseline year (9/1/2018-8/31/2019). These clinics typically serve patients with complex barriers to health care.
• Study overview: This study sought to understand how high risk and underserved patients used social services and how use of services impacted health outcomes and health care utilization. The integrated dataset included 28,258 patients with 36 months of clinical and social service data, including 12 months pre-pandemic/baseline and 24 months during the pandemic (9/1/2019-8/31/2020) and recovery periods (9/1/2020-8/31/2021). Patient records were linked with Mecklenburg County Department of Community Resources – Economic Data (to look at food assistance); the Homeless Management Information System (to look at housing assistance); and Crisis Assistance Ministry (to look at employment assistance).
• Preliminary findings: Linkage was successful for 41% (n=11,552 ) of patients with at least one social service record. Social service engagement, particularly food assistance, increased over time, while health care utilization patterns fluctuated. In adjusted analyses, engagement with social services during the pandemic was associated with higher likelihood of clinic visits and lower likelihood of death during the recovery period. These linked data provide critical insights into how social needs and clinical outcomes intersect across crisis and recovery phases. 

Integrating Health Care and Educational Data to Evaluate the Effectiveness of School-based Virtual Care and Teletherapy on Health Care Utilization and Academic Outcomes – Project Leads: Carlene Mayfield and Rachel George

• Patient population: K-12 students attending a school in the Charlotte-Mecklenburg Schools district who participated in Atrium Health’s Meaningful Medicine School-Based Virtual Care  and School-Based Virtual Therapy programs. 
• Study overview: This study assesses the effects of Meaningful Medicine SBVC and SBVT utilization on health care utilization and academic outcomes for participants of the programs. The programs allow students to virtually access a health care provider without having to leave school. The integrated dataset included 5,400 participants of Meaningful Medicine SBVC and SBVT linked with school records from Charlotte-Mecklenburg Schools for school years 2021/22-2023/24. Data will continue to be linked through the school year 2026/27.
• Preliminary findings: Compared to students who did not use SBVC and were not chronically absent, students who used SBVC were able to remain in class more often. They had fewer days absent in the semester following a SBVC visit, and fewer excused absences and more unexcused absences in the year students used SBVC. Taken together, these findings suggest that SBVC may reduce missed instructional time for students who are not already chronically absent, while highlighting the importance of additional support for students with more complex or persistent absenteeism challenges.

Project BOOST Retrospective Outcomes Analysis – Project Lead: Anneliese Mennicke, UNC Charlotte School of Social Work

• Population  studied: Young adults ages 15-24 who present to the hospital with intentional injuries such as gunshot wounds who are eligible participants of Project BOOST.
• Study overview: This project seeks to assess outcomes associated with Project BOOST, a hospital-based violence intervention program operated at Atrium Health. Specifically, the study investigates violent recidivism and social determinants of health outcomes across systems (e.g., law enforcement, child welfare, schools). The integrated dataset will include about 2,000 eligible participants of Project BOOST between 2022-2024. Demographic information and hospital records (e.g., injury complaint, length of stay) will be included. These participants will be linked with Charlotte Mecklenburg Schools; Crisis Assistance Ministry; Homeless Management Information System; Mecklenburg County Child, Family, and Adult Services – Abuse and Neglect Investigations & Family In Home Services; Charlotte-Mecklenburg Police Department Adult Victims; Housing Collaborative; Mecklenburg County Sheriff’s Office Bookings; and Goodwill Industries of the Southern Piedmont. 
• Preliminary findings: None at this time, project is still underway.

State Employees Credit Union: The Rise on Clanton – Project Leads: Eric Moore and Jenny Hutchison, UNC Charlotte Urban Institute

• Population being studied: Adults who previously experienced chronic homelessness who now reside or resided at the SECU Rise on Clanton.
• Study overview: In 2022, with funding from the State Employees’ Credit Union, Novant Health, and others, Roof Above converted a former hotel into apartments for individuals experiencing chronic homelessness. The Rise uses a housing first model, where barriers are reduced to access housing. This study seeks to understand the ways in which residents of The Rise access social and health care services prior to moving in. The integrated data set includes about 100 people who reside or resided at The Rise between 2022-2024. These residents will be linked with the Homeless Management Information System; Mecklenburg County Department of Community Resources – Economic Services; Mecklenburg County Sheriff’s Office – Booking; Charlotte-Mecklenburg Police Department Adult Victims; Medic; Atrium Health; and Novant Health.
• Preliminary findings: None at this time, project is currently underway.

The impact of this partnership has allowed for complex research to be conducted about very different populations in the health care system. This research can lead to improvement of services and care, replication of effective programs, and monitoring of hospital priorities and goals. 

Interested in learning more about the Data Trust? Email datatrust@charlotte.edu