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What are some Federal and industry PHR initiatives currently underway for children and families?

PHRs for children and families are beginning to gain more prominence through Federal and industry initiatives currently underway.  Both government and foundation funds have enabled the creation and implementations of PHR that fit the unique needs of children and their families specifically.  These PHR initiatives have focused on children with a variety of needs, including factors such as a child’s chronic condition, the age of the patient, or needs that arise from the child’s family situation.

Industry Initiatives

The first personally-controlled health record, as noted by the Regenstrief Institute , is Indivo.  Indivo is a free and open-source PHR developed by the Children's Hospital Informatics Program, with funding from the National Library of Medicine, and used by Children’s Hospital Boston and the Dossia Consortium.  This PHR compiles the patient’s treatment across participating sites and over time in a form that allows the patient and family to view and possess the information in the record.  

Other child-focused PHRs have emerged since then, including those developed as part of Project HealthDesign , another PHR initiative funded by the Robert Wood Johnson Foundation.  In particular, these PHRs have focused on enabling children with chronic conditions to become active participants in their care.  One PHR project from Vanderbilt University, called My-Medi-Health , seeks to help patients (5 to 9 year-olds with cystic fibrosis) and their families with medication management and easing children towards becoming more responsible for their own care.  Another PHR project from Stanford University, Living Profiles , is geared towards teenage patients with chronic conditions.  The goal of this project is to create a PHR that is well-suited to the tastes and preferences of teenage patients to actively engage them in their care and to ease the transition from pediatric to adult care.  In addition to these child-focused PHRs, there are PHRs geared towards the health of the child and the family.  MiVia , for example, is a PHR with versions in English and Spanish created to provide information and serve the health care needs of children and families in the migrant and seasonal worker community. Another PHR for children is Healthshack , which is currently a pilot program based on the MiVia/FollowMe platform.  This PHR was developed for homeless and marginalized youth and is available through the emergency shelter, day center, and on-site charter school operated by Wind Youth Services.  

Related Resources:

Pediatric Personal Health Records - user experience with the Liver Portal at Cincinnati Children's Hospital - American Academy of Pediatrics

Federal Initiatives

Like these PHRs, SurvivorLink is a PHR oriented towards children with a chronic condition.  Specifically, this PHR is under development at Children’s Healthcare of Atlanta with funding support from the Agency for Healthcare Research and Quality (AHRQ) for survivors of childhood cancer.  This PHR hopes to provide patients with a plan for long-term health care in the future and a platform for communication between patients, primary care providers, and specialty providers.  Yet another family-centered PHR is MiCare, which was established by the Department of Defense to help active-duty, reservist, and retired military personnel and their families track their health information.

Related Resources:

Funded PHR Projects - Agency for Healthcare Research and Quality (AHRQ)
Florida Medicaid’s Personal Health Record Demonstration Project - Department of Health and Human Services (HHS)