Living Profiles

Design of a Health Media Platform for Teens with Special Healthcare Needs

This article profiles a prototype of a personal health record for adolescents with special health care needs. This type of personal health record, called a Living Profile, is a health media platform that collects data from multiple sources to develop a Quality of Life Timeline for individuals with special health care needs as they transition from childhood into adolescence. The project was developed with technical support from Project HealthDesign.

The authors first provide an overview of the Living Profile prototype for adolescents with health care needs. They then focus on a functional module of the Living Profile that measures adolescents’ emotional fluctuations through text message analysis.

Key Findings:

  • In concept, Quality of Life Timelines would collect data from adolescents, including text, video, blogging and activities of daily living such as medication use. The Timeline could be used to help adolescents adhere to treatment and help providers monitor changes in the lives of their patients.
  • The Mood Meter is the initial module of the Living Profile and its prototype is currently functional. The Mood Meter collects text messages sent by adolescents with special health care needs and parses the messages for word frequency to gain insight into the mood and well-being of the user.
  • Adolescents interviewed were interested in the Mood Meter, felt that it portrayed their lives more accurately than the persona revealed in a doctor’s visit, and wanted to use the Mood Meter to communicate not only with physicians but also with friends and family.
  • Several obstacles exist for widespread use of the Living Profile, including privacy concerns, the utilization of the Living Profile in clinical practice, and the interoperability of the program’s functions across technological domains.

The Living Profile provides a novel mechanism to help adolescents with special health care needs track their mood and well-being.