Living Profiles: Design of a health media platform for teens with special healthcare needs

  • Authors:

  • Peter Chira;Lisa Nugent;Kimberly Miller;Tina Park;Sean Donahue;Amit Soni;Diane Nugent;Christy Sandborg

  • Affiliations:

  • Stanford University, Department of Pediatrics, Division of Rheumatology, 700 Welch Road, Suite 301, Palo Alto, CA 94304, USA;Johnson & Johnson Corporation, Comprehensive Care, Global Strategic Design Office, 601 West 26th Street, Suite 1601, New York, NY 10001, USA and Art Center College of Design, South Campus, 950 Sou ...;Art Center College of Design, South Campus, 950 South Raymond Avenue, Pasadena, CA 91105, USA;Art Center College of Design, South Campus, 950 South Raymond Avenue, Pasadena, CA 91105, USA;Art Center College of Design, South Campus, 950 South Raymond Avenue, Pasadena, CA 91105, USA;Children's Hospital Orange County, 455 S. Main St. Orange, CA 92868-3874, USA;Children's Hospital Orange County, 455 S. Main St. Orange, CA 92868-3874, USA;Stanford University, Department of Pediatrics, Division of Rheumatology, 700 Welch Road, Suite 301, Palo Alto, CA 94304, USA

  • Venue:
  • Journal of Biomedical Informatics
  • Year:
  • 2010

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Abstract

Living Profiles is a health media platform in development that aggregates multiple data flows to help teens with special healthcare needs (SHCN), particularly with regard to self-management and independence. A teen-oriented personal health record (PHR) incorporates typical teen behaviors and attitudes about health and wellness, encompasses how teens perceive and convey quality of life, and aligns with data related to their chronic medical condition. We have conceived a secure personalized user interface called the Quality of Life Timeline, which will assist with the transition from pediatric care to an adult provider through modules that include a mood meter, reminder device, and teleport medicine. With this personalized PHR, teens with SHCN can better understand their condition and its effects on daily activities and life goals and vice versa; additionally, use of this PHR allows for better information sharing and communication between providers and patients. The use of a teen-oriented tool such as Living Profiles can impact teens' overall quality of life and disease self-management, important attributes for a successful transition program.