Using a collaborative approach to develop and validate a portable health record for children and youth with special health needs

Families caring for children or youth with special health needs often struggle with continuity of care during emergencies or transitions. Medical records are not always immediately available to new healthcare providers, and some families have difficulties with providing a succinct summary of their child's health conditions. As a result of this need for concise medical information during transitions or emergencies, the Medical Home and Family Work Groups of the Western States Genetic Services Collaborative worked together to develop a portable health record (PHR) template specifically for individuals with genetic or metabolic conditions. Using existing PHRs as examples, Medical Home Work Group members created a template PHR based on information they want to know when evaluating a new patient with a genetic or metabolic condition. Family Work Group members then reviewed the draft PHR and made changes based on their experiences and perspectives. The PHR contains twelve sections including demographic information, diagnoses, medications and formulas, surgeries, common health concerns with suggested management, and behaviors and communication. The PHR is currently being pilot tested with youth with special health needs and parents of children with special health needs. The development of the PHR can be seen as a model in which family advocates and healthcare providers work collaboratively to create an important tool. We will discuss the process of developing a PHR using a collaborative approach, will review preliminary results from the pilot testing, and will talk about ways the PHR can be stored and accessed during times of transition or emergencies.