*Joyce M. Lee, MD
University of Michigan
Oral Presentation – Research Track
Sunday, Sept 30, 2012: 9:55 AM – 10:15 AM – LK130
(Research in Progress)
Social networks have the potential to transform quality of life, clinical care, and health outcomes for patients with chronic disease, but few patient-oriented chronic disease networks exist. We describe the development and design of a social network for adults and children with type 1 diabetes (T1D) and their caregivers, and planned activities for leveraging research opportunities within a social network.
In 2009, the Helmsley T1D program provided funding for an innovative information exchange called the T1D Exchange, which consists of a clinical registry, a biobank, and a nonprofit online social network for patients with T1D and their caregivers, called glu. (https://www.myglu.org/) The purpose of glu is to:
- Connect the T1D community
- Provide an opportunity for members to learn more about T1D, and
- Provide an opportunity for members to participate in research studies.
Glu is in beta and currently has 750 members. Fifty four percent are female, 76% have T1D, 12% are caregivers or dependents, the average age is 35 years, and 41% use an insulin pump. Features of the site include:
- A web platform and companion mobile platforms (for iPhone and android);
- The ability to “bond” or form a link with other members of the community based on personal characteristics or interests, type of diabetes management, or geographic location;
- The ability to contribute to discussion boards with the community;
- Privacy settings, in which members can choose multiple levels of privacy for all data elements including personal information, their nickname, avatar, and interests, and their communications on the website;
- A health record, for entering and storing medical information, including mood, blood sugars, insulin regimen, and HbA1c;
- A “question of the day”, in which patients are asked a question of the day and get instantaneous feedback and results.
Participants can also elect to participate in surveys about their diabetes and contribute to a HIPAA compliant Glu database that can be used for research. Glu plans to go live in June 2012, to the entire T1D community (including those in the registry). Additional planned features including uploading of clinical data to the personal health from the registry database and electronic medical records with member permission, recruitment of patients to research studies from the site, and a formal study to compare individuals in the T1D Exchange registry who join glu with individuals who choose not to join, in terms of demographics, types of therapies used, and overall glycemic control. This will provide greater understanding of the generalizability of research findings generated from the social network.
A social network that focuses on individuals with T1D has great potential for connecting and empowering patients, and expanding research opportunities in T1D. As the site goes live, we anticipate having powerful results to share.