A project coordinated by Children's Hospital Boston researchers found that social-networking tools, in conjunction with the use of personal health records, could be valuable in the monitoring of a chronic disease.
Dr. Kenneth Mandl, an associate professor of medicine at Harvard Medical School and director of the Children's Hospital Informatics Program's Intelligent Health Laboratory, and Elissa Weitzman, an assistant professor of pediatrics at Harvard Medical School and of adolescent medicine at the hospital, were co-principal investigators for the project.
Members of a social website run by a not-for-profit foundation for diabetes patients were invited to publicly or anonymously share their personal data regarding one common diabetes-control measure, according to a news release about the project. Data was submitted using an application based on the C.H.I.P.'s personally controlled health record; it was then displayed on state- or country-level maps in real time, according to the release. One in five users of the social website signed up for the application, and 81% of the application's users shared their data, the researchers noted.
“There is growing recognition that online communities not only provide a place for members to support each other but also contain knowledge that can be mined for public health research, surveillance and other health-related activities,” Mandl said in the release. “We were hoping to gauge the community's willingness to share their personal data for public health surveillance and give them a tool that allowed them to securely share their data.”