Skip to main content

HL20: Fred Trotter—Balancing Skepticism, Crowdsourcing, and Big Ideas in Healthcare IT

 |  By smace@healthleadersmedia.com  
   December 20, 2013

Fred Trotter has written a book called Hacking Healthcare, but now he is going to try Hacking HIPAA. That's the name of Trotter's newest venture, a crowdfunded project aimed at circumventing standards bodies and sluggish healthcare giants in order to bring HIPAA into the 21st century.

This profile was published in the December, 2013 issue of HealthLeaders magazine.

At an impromptu lunchtime gathering in Silicon Valley's Computer History Museum, Fred Trotter is drawing lines and boxes on a whiteboard. From around the room, other programmers, healthcare IT experts, and a privacy expert or two toss in suggestions. Trotter excitedly adds to the drawing, challenging some suggestions as he goes, accepting others, and even raising a skeptical eyebrow at his own work.

It's all in a day's work—and play—for the author of Hacking Healthcare, who this May day was helping lay the groundwork for a crowdfunding project known as Hacking HIPAA, which tries to circumvent ponderous standards bodies, sluggish large healthcare giants, and secretive startups to bring HIPAA into the 21st century by clever coding and collaboration.

Trotter will be the first to tell you this work sure beats trying to change things by legislation. If anyone can pull it off through the wisdom of crowds, it's Fred.

"More and more I have been doing things where somebody decides to pay my bills for a little while, and I go and do what I think is the most interesting thing ever," Trotter says.

One of the latter inspirations got its initial crowdsourced funding of $45,000 in 2012. DocGraph, the result of a Freedom of Information Act request, was Trotter's first foray into crowdfunding liberated health data. It started with a set of data from CMS he liberated that contained 60 million referral relationships, nearly 80% of the referrals doctors make to each other in the United States.

He released the data set to attendees of Strata Rx, a healthcare data analytics conference, and reverted to a Creative Commons license. The goal: To create multiple doctor-rating algorithms that patients can use and doctors find fair. "The current credentialing system is abysmal," he says.

DocGraph didn't stop with referrals. Analysts could use Trotter's Freedom of Information Act–obtained data to see which hospitals have poor central line infection rates, and more. A few months later, without further FOIA prompts, CMS stepped up its own release of hospital quality and pricing data—and Trotter's early breakthrough probably shares credit for making that happen faster.

"We are not just building better data systems. We are building a new kind of mind, and that is precisely the place where you need to have ethics deeply embedded," Trotter said at his O'Reilly's Strata Rx 2012 talk.

For all his iconoclastic tilting at medicine's windmills—Hacking HIPAA failed to receive its needed crowdsource funding by its initial August 2013 deadline—it might surprise you to hear that healthcare IT is the Trotter family business, if you will. Trotter's grandfather owned a franchise for Medical Manager, which Trotter says was a very popular practice management system in the 1980s. His aunt and uncle also worked on Medical Manager as well.

But Trotter took a side trip or two before settling into healthcare IT. His first job was doing Internet security for the Air Force Information Warfare Center as a contractor. During a subsequent set of lucrative Internet jobs, he met current collaborator Ashish Patel, an expert at security networking infrastructure of large hospitals.

The return to healthcare was prompted by Trotter's mother being diagnosed with ovarian cancer. "It's almost always progressed too far by the time you even know it's there, which is exactly what happened to my mother," he says. In short order, Trotter made major life changes, getting married, joining the Marine Corps Reserve, and taking over research and development at his family's business.

"The first question I asked of health IT was, what kind of system would need to exist that would be able to make a better guess about my mom's symptoms than what the doctor did?" Trotter says. Now he realizes he was imagining a system similar to IBM's Watson, emerging computer technology that understands natural language and reads vast amounts of healthcare data to generate hypotheses and different probabilities of various outcomes.

"I realized that there were just so many Lego pieces beneath Watson that needed to be built, that I was probably never going to get to that in my career, and I haven't," Trotter says. "I haven't even come close to those kinds of aspirations, but I had a significant impact on all these lower-level Lego blocks."

Then there was the process by which Trotter and coauthor David Uhlman arrived at the title for their book, Hacking Healthcare: A Guide to Standards, Workflows, and Meaningful Use.

"We debated that issue, who was going to be pissed off by this book title," Trotter says. "We spent a lot of time thinking about that, and then we came to the conclusion that all the right people would be pissed off by that title. So we decided that we would move forward under that rubric. So yes, there are people who don't like the title and don't like the thesis, and in general, I find that completely and utterly okay."

Trotter is bullish on the future of crowdsourcing healthcare IT. "I just realized, way back when I was doing my very first systems, that I wasn't the smartest person I knew who was working on the problem I was working on, and that I wanted to collaborate and be ruthless about collaboration," Trotter says. "I always did everything I could do to get my work out there in front of people who I thought were smarter than I was."

Like a lot of open-source advocates, Trotter struggles with IT seesawing between setting standards to promote interoperability and promoting innovation through open-source projects. "It's a curve ball for the whole healthcare system," he says. "MITRE [a not-for-profit organization that operates research and development centers sponsored by the federal government] did an analysis which showed a fairly reasonable correlation between the complexity of the clinical quality measures and the rate at which they were adopted in the EHR developer community. More studies need to be done on that.

"We should be using a method of evaluating quality measures; I became a lot less confident in our system of quality measures because I don't see the evaluation happening."

To understand how Trotter thinks, you have to immerse yourself in what has made open source, with its meritocratic ways, successful in IT. "Collaboration without meritocracy is communism,"

Trotter says. "You have to have a meritocracy, so if you and I were working together, and we get to have equal votes on what ideas get implemented, then we have a problem, because you get a hundred people in a room, the lowest common denominator will always get the vote. If you look at HIMSS and the American Medical Association, any of the big associations, unfortunately, the lowest common denominator is what those organizations very frequently spew out. The exact opposite happens in the open source community."

With all the challenges still ahead for healthcare IT, count on Trotter to be raising those skeptical eyebrows a bunch more, and then getting back to work and urging others to join him.

Pages

Scott Mace is the former senior technology editor for HealthLeaders Media. He is now the senior editor, custom content at H3.Group.

Tagged Under:


Get the latest on healthcare leadership in your inbox.