There are many illnesses that are simple to identify but there are other illnesses that can be complex and extremely difficult to diagnose. NIH estimates that even with the ability to diagnose 20,000 medical conditions, there are still about 7,000 rare conditions that are hard to identify. According to Elise Singer, a physician working on her MBA at UC Berkeley, about half a million people in the U.S. have undiagnosed or misdiagnosed diseases as well as complicated and misleading presentations of more common conditions such as multiple sclerosis, Lyme, and celiac disease.
According to an article appearing in the Center for Information Technology Research in the Interest of Society (CITRIS) August newsletter, the National Organization for Rare Disorders say that when a patient is diagnosed with a rare disease, it takes 36 percent of the patients more than a year to find a diagnosis and another 17 percent more than six years.
Brad Kittredge, A UC Berkeley MBA and Public Health student had to look for his own hard-to-diagnose symptoms for four years and went to nearly 20 doctors before he learned that his condition was not too serious. Last year, he teamed up with Singer and two computer programmers to find a way to connect patients with the doctors who are most likely to successfully diagnose their conditions.
Kittredge and Singer and the other partners are establishing a new company called ComplexDX to turn the traditional hunt for a diagnosis on its head. Rather than going from doctor to doctor, patients pay ComplexDX to post their cases to an online database where participating doctors can examine and solve the cases. The group won a CITRIS Big Ideas Award for $8,000 in 2009 and has since raised additional startup funds with plans to launch the business this fall.
The company will charge each patient $250 to $500 to have their case listed in the database and the doctors will be paid $1,000 for each correct diagnosis. The team is developing software to help patients describe their symptoms and develop narratives to enable the doctors to review the telltale signatures of hard-to-diagnose illnesses.
After identifying interesting cases, the ComplexDX affiliated specialists will then suggest diagnoses and make suggestions about further tests or treatment options. It will however be the patients’ primary care physician who will follow up. “We are limiting ourselves to providing diagnoses at this point and steering clear of the treatment business for now”, says Kittredge. For legal reasons, the patients and the ComplexDX doctors who review their cases will each be represented in the database only by numbers with their identities remaining private.
For more information on CITRIS, go to http://ucberkeley.citris-uc.org. To read the current newsletter, go to http://ucberkeley.ctris-usc.org/publications/newsletters/current_newsletter.