Personal Health Record for Youth Emancipating from Foster Care

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Project Summary There are 427,000 children in the custody of child protective services (i.e., foster care) in the United States. Children remain in foster care an average 19 months, with 26% of children in foster care for 2 years or longer. Adolescents experience an average of 7 placement changes during their time in foster care, and approximately 5,000 youth emancipate from foster care annually. States provide independent living programs prior to emancipation to help with the transition, which includes housing and utilities, assistance with education, classes about activities of daily living, and monitoring. However, support for health care self-management is not provided, and teens in or emancipating from foster care are generally unable to access their medical records. While in custody, access to medical records is managed by caseworkers; foster youth report limited access to health information and caseworkers and caregivers report not having sufficient health information for the children in their care. This lack of health information results in foster youth reporting no knowledge of how to access primary care, poor management of chronic conditions, and increased preventable disease. Providing health data from the electronic health record could improve health knowledge, care coordination, and patient outcomes in this vulnerable population. However, no sustainable system to provide personal health records (PHRs) to this vulnerable population has been developed. The objective of our research is to improve health outcomes and promote health behaviors in foster youth experiencing a transition from pediatric to adult health care systems and are emancipating from foster care. As a critical step toward accomplishing this goal, this project will create and distribute a PHR for foster youth to be distributed at age 18. The execution of the aims described below will position us to scale providing portable health records to other communities where child welfare administrative databases can be linked with the electronic health record. Our project will create and distribute a PHR to foster youth, a vulnerable population, and lay the necessary foundation to assess feasibility. This is essential for future studies seeking to examine whether providing PHR changes health service utilization once youth have emancipated. With foster youth and caseworker involvement, we will create a model PHR. We will extend existing collaborations with Hamilton County Jobs and Family Services to add designed PHRs to our existing data-sharing processes, and we will work with the community and providers to ensure that foster youth receive a PHR upon emancipation from foster care. This project will have meaningful impact on child health outcomes by delivering health information when youth need it most; we believe this will ultimately lead to improved healthcare utilization and provide infrastructure to support additional grants to improve the health and wellbeing of children in and emancipating from foster care.