Researchers are creating personal health records for foster care youth
A team of researchers at Cincinnati Children’s is creating new ways to share and manage health data for foster care youth. From left are Sarah Beal, PhD, Judith Dexheimer, PhD, and Mary Greiner, MD, MS (with Idina, a facility dog).

Researchers at Cincinnati Children’s are aggregating medical data to provide youth in foster care and their caregivers with better access to health records—and the chance to take control of their own well-being.

For foster care youth, successful health outcomes depend on the ability of caseworkers, caregivers, clinicians and in some cases the children themselves to access their information.

Two separate projects are underway: The IDENTITY (Integrated Data Environment to eNhance ouTcomes in cusTody Youth) project seeks to help this vulnerable population in Hamilton County by coordinating data sharing between caseworkers and healthcare providers. The newer MyIDENTITY project is building on that initial effort to offer personal health records directly to foster care youth who have reached age 18 and have not yet emancipated.

The average child remains in foster care for 17 months. During this time, caseworkers manage access to their medical records. With 2,300 children in the custody of Hamilton County child protective services, a lot of data can get lost in the shuffle.

Things can get even more complicated for adolescents in foster care. They experience an average of seven placement changes while in custody. When teens age out of the system or emancipate themselves—20,000 do just that every year in the United States—they are often unable to access their health records.

Cincinnati Children’s researchers Judith Dexheimer, PhD of Emergency Medicine, Mary Greiner, MD, MS of General and Community Pediatrics, Sarah Beal, PhD of Behavioral Medicine and Clinical Psychology, and Eric Hall, PhD of Neonatology and Pulmonary Biology partnered with Kris Flinchum, Crystal Anderson, and Kristin Bullock of Hamilton County Job and Family Services (HCJFS) to begin working on this project in February 2017. A grant from the Cincinnati Children’s Hospital Academic Research Committee (ARC) fund supported the work.

Making it happen

“For years, an interdisciplinary team of community stakeholders invested in child welfare has discussed the possibility of linking child welfare and other data but did not have the resources to make it happen” says Cincinnati Children’s Sarah Beal. “Organizations involved included HCJFS, ProKids, the public defender’s office, GE, Cincinnati Children’s, and local nonprofit organizations.”

In 2014, Beal met with HCJFS’s Kris Flinchum to discuss linking child welfare and EHR data for research purposes. Kris Flinchum now serves as lead collaborator on the project for HCJFS.

“Shortly after, Mary Greiner and I started discussing whether that could be a first step toward accomplishing the longer-term goal of daily information exchange between HCJFS and Cincinnati Children’s,” says Beal.  “Eric Hall was working with me on the data linking project and introduced the team to Judith Dexheimer, who joined us as we prepared our first ARC application in 2015.”

In October 2017, a second award from the National Library of Medicine allowed the team to extend the project to provide foster youth with their own medical information. This branch of the project is called MyIDENTITY.

The team is now pilot testing the IDENTITY system, which will be launched in June with all HCJFS caseworkers and Cincinnati Children’s clinicians and staff. MyIDENTITY is currently under development.

IDENTITY: Access for caseworkers and clinicians

One reason foster children fail to receive appropriate healthcare is the lack of access to health information by their caseworkers and clinicians. Between entering foster care without adequate health records and changing placements without data coordination, information is lost and care is disrupted.

The interdisciplinary project team integrates experts from Hamilton County child protective services with bioinformaticians, data analysts and medical specialists from Cincinnati Children’s. 

The IDENTITY project provides children’s services workers and clinicians with the resources they need to support children in foster care. Currently, child welfare data is stored in the state welfare database. Caseworkers enter custody data, social history, and abuse history into the database. However, healthcare data is stored in electronic health records (EHRs) maintained by providers. The two databases are separate, with no users having access to both.

The lack of integration between the state welfare data system and EHR complicates the communication of critical health history details to caregivers. Records in the two systems are difficult to obtain, resulting in repeat services and poor healthcare quality. Even when data are shared, the process can take several days to weeks.

Researchers saw the need to merge these records, allowing users of one system limited access to the other. Dexheimer and team responded by building IDENTITY, a web portal that establishes an information exchange data hub between the state welfare database and Cincinnati Children’s EHR. Caseworkers from HCJFS and healthcare providers from Cincinnati Children’s are now able to share key elements from their respective records.

“It’s an important step towards improving timely communication between clinicians and caseworkers,” says Dexheimer. “An increasing number of children are entering foster care. We want to do more to help improve their transitions, keep their care standard, and help all parties communicate.”

How it all works

Most patients at Cincinnati Children’s manage and receive information about their health through MyChart, an existing online medical record database. But, because hospital administration couldn’t control MyChart in the way they needed to for legal compliance for this project, the research team built IDENTITY as a separate platform.

Data services staff helped linked data from separate systems.
The Data & Technology Services team in Cincinnati Children’s Division of Biomedical Informatics worked to accurately link data between the two systems.

Now, HCJFS sends state welfare data of all children in their custody to the stand-alone IDENTITY system each day. Cincinnati Children’s does the same with medical records data, and the two data streams are merged. Authorized personnel from both institutions can access the merged data via a secure web portal.

Accurately linking patient data between the two systems was a key technical challenge in the project. To solve it, the researchers looked to staff in the Data & Technology Services group within the Cincinnati Children’s Division of Biomedical Informatics.

Under guidance from Drs. Dexheimer, Beal, and Greiner, Parth Divekar developed patient linkage algorithms and Jay Gholap implemented them.

The algorithms Divekar developed are broadly classified as deterministic and non-deterministic. Accounting for about 90 percent of the matches and validated with sample data, the deterministic algorithms use registered names/aliases (eliminating punctuation), dates of births and gender.

For the remaining matches, non-deterministic algorithms use methods such as “edit distance” (a way of quantifying how dissimilar two text strings are to one another by counting the minimum number of operations required to transform one string into the other) to reduce “noise” in the data such as differences in spelling, dates of birth and gender while also helping to identify potential duplicates. 

Elsa Cavanaugh and Jeremy Nix, also Data & Technology Services team members, developed an interactive online interface to facilitate administrator review and approval of non-deterministic matches.

This system allows clinicians at Cincinnati Children’s to accurately and efficiently identify which children are in HCJFS custody when they come in for care. It improves the processes of receiving medical consent, scheduling, billing, and identifying associated health risks in the clinical setting.

After a child receives care, their clinical information—including allergies, medication lists, and upcoming appointments—are shared back to HCJFS caseworkers.

With the new system, the transition for a child experiencing a change in placement in foster care will be made easier because their caseworker will have ongoing access to their health information.

Researchers can also identify children with the highest healthcare costs, allowing clinicians and caseworkers to develop shared care management strategies and interventions.

MyIDENTITY: Access for foster youth

When youth leave the care of HCJFS, the responsibility of medical treatment falls from their caseworkers to their own shoulders. An uphill battle begins. Missing health information often results in limited knowledge of how to access primary care, poor management of chronic conditions, and increased preventable diseases.

Dexheimer, Greiner, and Beal saw the need for youth to be able to access their own comprehensive health information available from the IDENTITY databases and began the MyIDENTITY project to help alleviate these challenges for foster teens.

Funded by the National Library of Medicine, MyIDENTITY will merge data from the EHR and HCJFS databases to provide a personal health record (PHR), or summary of the foster youth’s medical history, conditions, and health resources. Researchers will use algorithms to identify foster youth from the HCJFS database who are eligible to receive their own PHR, whether they have reached age 18 or have emancipated.

Researchers are still gathering feedback on what data should be included in the system. “We are going straight to some of the highest risk youth and asking them what information they need to be healthy and how they want to get it,” says Greiner. “Then, thanks to the biomedical informatics team, we will actually be able to build it and measure how access to this information results in changes in healthcare.”

The research team plans to gather feedback from foster youth on the PHR to address their specific needs: How will you use it? What elements does it need to contain? How can it be most beneficial to you?

“Researchers have demonstrated that stakeholders—youth, parents, pediatric and adult clinicians and specialists—have differing views as to what information and skills are important to aid youth in the transition process,” says Dexheimer. “To ensure all necessary information is available in a PHR, and thus smooth the transition to adult care, all stakeholder groups should be involved in the design of the medical data.”

In spring 2018, researchers will map out concepts and ideas with foster youth and their communities, who will also help design the PHR in the fall. The Cincinnati Children’s biomedical informatics team will then build the system, test it, and roll it out to foster youth.

Future designs may be expanded to include additional data elements, such as school information, that will help improve the transition of foster youth.

“Healthier foster care youth means chances to finish school, get jobs, build healthy families, and live successful lives,” says Greiner. “This is how healthcare research changes the outcome.”

The researchers working on the IDENTITY and MyIDENTITY projects are open to more collaborations, such as with local schools, to add more data sources. For more information, please contact Judith Dexheimer.