Data-sharing tools improve care of youths in protective custody
Judith W.Dexheimer, Ph.D., Sarah J.Beal, Ph.D. and Mary V.Greiner, M.D., M.S., FAAP
Health IT Trends
More than 442,000 U.S. children are in protective custody (e.g., foster care), according
to the Adoption and Foster Care Analysis and Reporting System, http://bit.ly/2C8MsLy. While their medical data are stored and maintained in an electronic health record,
child protective services caseworkers do not have direct access to the data. Even
when requested, the process of obtaining full records from a health care institution
often is lengthy.
Health care providers face similar challenges when a child in protective custody accesses
health care services. Custody status often is unknown, and providers may not have
caseworker contact information or placement and maltreatment history. This information
often isn’t carried with the child and therefore may not be available at an urgent
visit such as in the emergency department. Additionally, out-of-home care leads to
changes in caregivers and living arrangements, often resulting in disruptions to established
health care providers and contributing to medication lapses and missed appointments.
Sharing data between health care and child welfare systems is vital to help provide
the highest-quality and most continuous care possible for children in protective custody.
“Children in foster care do not always have a stable advocate or caregiver to ensure
the transmission of accurate and intact health care information,” said Eric S. Kirkendall,
M.D., M.B.I., FAAP, a member of the AAP Council on Clinical Information Technology
The first hurdle in sharing data is to ensure appropriate agreements are in place
between medical care providers and child protective services caseworkers so that both
sides are comfortable with the data to be shared, where the data are to be stored
and what data can be displayed to users. Agreements should address data privacy and
security, and comply with the Health Insurance Portability and Accountability Act.
End users (clinicians, caseworkers, etc.) should be involved in designing the data-sharing
application to ensure that it is readily accepted and easy to use.
Efforts are underway across the country to link data across systems. Researchers and
clinicians at Cincinnati Children’s Hospital Medical Center (CCHMC), for example,
developed an application called Integrated Data Environment to eNhance ouTcomes In
cusTody Youth (IDENTITY). The application merges data in near real time from two disparate
databases to coordinate communication between users and improve health outcomes for
youths in protective custody.
IDENTITY displays data from the child’s medical and child welfare records to providers
and caseworkers to help ensure accurate and timely sharing of information. The system
includes data for all children in protective custody in the county. Next steps include
spreading the application to additional hospital and child protective services systems
and adding new data sources, such as education data.
“Projects such as IDENTITY help to bridge the gap in this vulnerable population,”
Dr. Kirkendall said. Clinicians and caseworkers need access to medical and custody information to be effective
advocates for children in protective custody. Electronic data-sharing tools and platforms
can help ensure that up-to-date information is available for health care systems,
community pediatricians and caseworkers, thus improving care coordination and patient
Dr. Dexheimer is a member of the AAP Council on Clinical Information Technology. Dr.
Beal is a developmental psychologist and researcher at CCHMC. Dr. Greiner is a member
of the AAP Council on Foster Care, Adoption and Kinship Care Executive Committee.