As anyone who has had the courage to research a sore throat or mystery rash online knows, there is an overabundance of information available to help you try and get a handle on what ails you. What has been missing, however, is easy access to other kinds of medical information that have a direct bearing on healthcare, including a patient's own medical records, test results, copies of X-rays and MRIs, and how one doctor performs when compared to others in his or her area of expertise. Enter self-described health IT hacktivist and author Fred Trotter, who, with a bit of crowdfunding cash, and a whole lot of patience, has hatched a plan to bring hidden healthcare data into the open.
Through a Freedom of Information Act request, Trotter (right) was able to pull doctor referral data from the Medicare system to build what he calls a "Doctor Social Graph." The graph shows 60 million relationships between doctors, and how often they refer patients to one another. The idea is to help patients find doctors who other doctors trust. Trotter gave the data away to attendees at the Strata Rx conference held in San Francisco in October. A team from startup HealthTap was in attendance, and recently used the data to create a doctor referral search tool for patients called DOConnect.
But for Trotter, unearthing physician referral data is merely the beginning of a larger effort to bring all kinds of what he calls "opaque data" to patients. This is data, Trotter says, that is technically available to anyone, but is so poorly organized, or buried so deep within state and federal government agencies as to be unusable or just plain undiscovered. Already Trotter has dug up some state-level doctor credentialing data, which shows a doctor's medical practice history and certifications, and data from Medicare nursing home inspections. He's launched a Medstartr campaign to get more. He plans to use the data to start to answer some simple but important questions, as well as build powerful patient tools.
"For instance, if people in Chicago get the best medical care from Loyola medical school graduates versus the University of Illinois, someone should be able to use this data, at least as a component, to find that out," Trotter says.
Ultimately, Trotter is looking to build a rating system of doctors informed by data he plans to pry out of insurance companies and state and federal health agencies. The rating system would give patients a complete overview of a physician's career and a score based on their professional history, board certifications, how many doctors refer patients to them, and other metrics. The key, Trotter says, is to build "a rating system that patients find useful and doctors find fair."
The data Trotter is going after could also be used to build a variety of patient tools. For example, what if there were an automated system that could pull together your medical records from every doctor you've ever seen, even if you can't remember their names? If someone else doesn't build it first, Trotter says he will.
If you're interested in getting your hands on the Doctor Social Graph, and the rest of the data Trotter plans to dig up, his MedStartr campaign ends December 10. Sometime next year, Trotter's Doctor Social Graph will be made available under a Creative Commons license.
Trotter believes that by using data to evaluate doctors and the healthcare industry on both the national and local levels, the U.S. can get real healthcare reform. "I am very supportive of all of the healthcare reform efforts, but not exactly Obamacare or Romneycare," he says. Trottercare? It has a transparent ring to it.
