*Jermain Kaminski, Peter Gloor
Massachusetts Institute of Technology, Center for Collective Intelligence; MIT Center for Collective Intelligence, Collaborative Chronic Care Network (C3N)
Oral Presentation – Practice Track
Sunday, Sept 30, 2012: 12:25 PM – 12:45 PM – LK120

*Presenting Speaker

(Beta launching in June 2012)

The combination of practical experiences in the C3N project and preliminary research at the MIT Center for Collective Intelligence suggests that the online connectedness among patients of IBD should be improved. While surveys among IBD patients show that 87% of patients prefer Facebook to connect to other patients, the network density and communication frequency in these groups is remarkable low and unsatisfactory for patients. Equally, exemplary studies on helminthic therapy methods underline the weak diffusion of innovations among Facebook groups on IBD. YouMeIBD is a step toward an open-source participatory health care system, wherein patients, physicians, clinicians, and researchers collect data and contribute to the collective intelligence for improved chronic illness care. Our goal is to work towards improving the lives of these stakeholders by enabling them to connect through an online social space that matches individuals in the network based on shared questions, friends, answers and interests.

“Our matchmaking combines three factors:

  1. Quiz data: Users can answer and provide questions that let them discover “soulmates” across the network.
  2. Facebook profile : During the registration process, the user is asked to link his Facebook account to his new account at YouMeIBD. Matchmaking is based on the friends of a user and shared attributes among users such as shared membership in groups and fan pages.
  3. Disease-specific attributes: Based on our survey results, users want to connect based on shared symptoms and medical regimens adhered to.

Using a matchmaking system, we utilize the concept of homophily, often applied by dating websites. Related researches claim that individuals more often start a relationship with similar individuals than with dissimilar ones. Additionally, research shows that social network usage was found to correlate with measures of psychological wellbeing, suggesting that it might provide benefits for users experiencing low self-esteem and low life satisfaction. We try to coalesce these findings into the self-managing “community of practice” of YouMeIBD. However, most important in this context is to overcome individual network thresholds and social proof and to utilize weak ties, which are a potential accelerator of community feeling and an influential factor in the diffusion of innovations.

The purpose of this project is to increase connectivity among patients, physicians and other caregivers in chronic illness populations through an online social networking hub. Intially targeted for the inflammatory bowel disease (IBD) community, YouMeIBD is intended to be a non-profit prototype, to be extended to other chronic disease groups. The ultimate goal is to form groups of intrinsically motivated collaborators that do not join together for immediate reward, but because they share a common vision.

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