Informatics Research Seminar: Personal Health Records– Their Role and Purpose in People’s Lives

March 30 @ 4:00 – 5:00 pm


Speaker: Barbara Wildemuth & Kaitlin Costello
Presented from UNC-CH


Personal health records (PHRs) have the potential to empower people in managing their long term healthiness and in communicating effectively with their health care providers. Currently we have only anecdotal data concerning how and why someone might use a personal health record. Therefore, an exploratory study was conducted to identify the potential uses of and patients’ concerns related to acceptance of PHRs. Forty-three semi-structured interviews explored the range of uses for which people would create and maintain PHRs, the types of data they would keep, and the privacy and security issues that are most important. Study participants were purposively recruited from four specific groups that are likely to be early adopters of PHRs: parents with young children, adults with chronic illnesses, adults caring for older parents, and older adults. The purposes for which people would keep a PHR include summarizing their medical history, analyzing trends in symptoms or other health indicators, communicating with their doctors, and handling an emergency. Other results have implications for what the PHR should include and who should have access to it and under what circumstances.


Barbara Wildemuth is a Professor and Associate Dean for Academic Affairs in the School of Information & Library Science at UNC-CH. Her research interests are centered on people’s interactions with information and information technologies, with a particular focus on people’s interactions with health information. Her teaching includes courses in various aspects of research methods, user interface design, and information ethics.

Kaitlin Costello is a second-year doctoral student in the School of Information & Library Science at UNC-CH. Her research is focused on social networks and personal health information management. She is particularly interested in why leukemia patients use social networks, what motivates them to share personal health information online, and how these activities impact health outcomes.