Barriers and Facilitators to Adoption of Personal Health Records: A Study of Families with Children with Special Health Care Needs

This project explores the barriers and facilitators to adoption of electronic Personal Health Records (PHRs) in low income families/caregivers of children with special healthcare needs (CSHCN). Focus groups at two community support organizations were conducted in English, Spanish, and Cantonese. Usability studies of Google Health, a personal health record that is partnering with Lucile Packard Children’s Hospital, were also conducted in English with parents. These studies will help explain: 1) the current methods by which parents manage healthcare information, 2) the knowledge, needs, and concerns of caregivers about PHRs, and 3) design goals for improving PHR accessibility.
Focus groups and interviews following the usability studies consistently showed that parents rely on paper-based methods even though healthcare providers may not always give full copies of records. This incomplete record frustrates parents and impedes information flow between the multiple healthcare providers of special needs children. The PHR was met with excitement by families, but few families were aware of the PHR’s availability before participating in the study. However, the majority of parents expressed a desire to learn and begin using a PHR to complement their information management needs. Although privacy concerns, technology literacy, and health literacy remain as foreseeable barriers to PHR adoption, families
with CSHCN can derive immediate benefit if they are informed and educated about the availability of the PHR to manage healthcare information. Developers of PHRs can support this goal by ensuring that sound usability is a priority, thereby presenting a compelling option for parents.