Rare Disease Network Connecting Patients with Experts Highlights Hospitals’ Knowledge Base

August 1, 2013

About 25 million people across the globe have a rare disease. One member of DreamIt Ventures’ healthcare startup accelerator DreamIt Health has developed an app to help connect patients with a global network of rare disease experts. SpeSo Health’s network includes physicians, clinicians and the hospitals and institutions where they work. But it’s also helping hospitals to raise their profiles detailing the scope of rare disease expertise in their communities.

SpeSo Health’s dual faced app came about partially by a happy accident. It realized that the best way to monetize its app and still provide free access to consumers was to figure out a way for hospitals to boost their rare disease profile. As co-founder Jonathan McEuan tells it, hospitals were surprised when the team would catalog the scope of rare disease knowledge among their staff. Sure, the point person might know about 10-20 diseases their team of physicians and clinicians had experience with, but were amazed when SpeSo could reference more than one hundred diseases. It has the potential to draw a larger patient population to them.

This is how its consumer facing app works. Users search for a disease and the search results generate a list of hospitals. It includes details like, how many experts in that disease work at the hospital, how many clinical trials it’s running for that disease and the number of journal articles staff have authored. It also scores network influence. It does that through a combination of math and statistics to understand how experts influence their peers through publications, clinical trials, and other activity. It also has an appointment scheduling tool for each hospital.

It could be a boon for advocacy groups to make it easier to find rare disease experts. In addition to hospitals, the company is also seeing opportunities with payers and biopharma.

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