Hi everyone, my name is Will and I am a student at the University of Georgia. Part of my summer internship is to partner with a local hospital system and assess how they would create online communities for patients with rare diseases.
As I do my analysis, I now understand that Hospitals were designed for Acute Care, and they don’t fit as well with Chronic Care situations. That being said, the patient, the spouse of the patient, the caregivers (primary care, specialists, nurses, psychologist, social worker), and the research community (in the case of more rare diseases) are in need of a sustainable community that would allow all of these different people to connect on a peer-to-peer, non-hierarchical basis.
These online communities would be for people with rare diseases and chronic conditions. Studies have shown that the rate of remission in people with rare diseases can increase significantly by the use of these online communities especially when there’s a robust collaboration.
With this background information in mind, I was wondering if anyone had suggestions or answers for the following questions:
What platform would best accomplish the mission of this community?
What would be a good set of criteria for creating an online community?
Assuming I might not be able to accomplish all of the above criteria, what would be the most important of the criteria mentioned?
is it realistic to assume that a platform could be mainly self-service versus having to have an IT support person always on the clock supporting the platform?