5 'crazy ones' reshaping health IT

We spotlight five innovators who are daring to do things a little different
By Healthcare IT News
09:17 AM
Silhouette of head with gears

"Here's to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes.

The ones who see things differently …While some see them as the crazy ones, we see genius. 
Because the people who
                                           are crazy enough to think they can change the world, are the ones who do."


With a nod to Apple and its famous 1997 TV spot, which highlighted doers and dreamers in all fields of endeavor who colored outside the lines, we put the spotlight on just five of the many 'crazy ones' who are helping transform health IT in new and unique ways. 


The Trailblazer

By Erin McCann, Associate Editor

There was no Epic or Allscripts. It was long before the days of meaningful use. In fact, there was no full electronic medical record system in the nation to speak of. Clement McDonald, MD, recalls those days with ease.

It all took place beginning in 1972 at the Regenstrief Institute when McDonald and a few colleagues took it upon themselves to develop what was widely considered to be the first EMR system in the country. 
What's more, no one had asked him to build it. "We were sort of mavericks all along," he says, chuckling. McDonald had been planning on building a system since the mid 1960s, a plan stemming from what he observed while interning at Boston City Hospital, where hospital admissions were an ordeal in their own right. 
"It took five or six hours to admit one patient before we had all the data," he told Healthcare IT News
"I just knew that it was stupid that we were spending so much time finding information to make good decisions about patients," he says. Oftentimes, they couldn't even locate the right information. "It seemed like the effort should be to do the best job for the patient not to spend the time scrounging." 
He knew computers could transform the way medicine was practiced. He also realized he was capable of pioneering the project, as between his internship and residency, McDonald earned his master's degree in biomedical engineering and subsequently spent two years at the National Institutes of Health where he built an automated laboratory system. "That convinced me it was really doable," he recalls. So he went to work. 
McDonald started small. His and his team's first goal was to do the data capture display and reminders – what's now decision support – for the Wishard Diabetes Clinic, which had 35 patients at the time. 
After each patient visit, McDonald explains, they'd reprint the whole medical record. It would contain the flow sheet detailing the time course of each observation – blood pressures, drugs, test measurements – together with another piece of paper containing reminders like, "it's time for your mammogram."
Then, there was a third paper form, the "encounter form," which included pre-printed data the clinic already knew about the patient. The patient would fill in items for that particular visit. Then these forms would be optically scanned into the computer. 
And the computer?
After a brief stint with a PDP-11/44, put out by the Digital Equipment Corporation, Regenstrief soon purchased an upgrade, the PDP-11/45.
As McDonald recalls, the computer had a 10-megabyte disc, 64 kilobytes of ram and cost around $170,000. 
Within a year and a half, they had things up and running for the Wishard Diabetes Clinic – then they completed the entire medicine clinic by 1974. The project expanded to the hospitals in the '90s, and now carries data on more than 10 million patients. 
McDonald went further. Together with the medical record project, he and his team also built a lab system, a pharmacy system and a scheduling system, using their own interfacing and codes. 
Interfacing was no easy task, though, especially when hospitals started a buying frenzy with new EKG systems and cardio echo systems. "We would do interfaces with them in really awkward and not successful ways, like you take the printer output and you run a wire to your computer, and then you capture the report and then you parse out the information," he recalls. "If the printer line wasn't plugged in, it just sent (data) out into the ether. It didn't warn you like it does today, like your printer is offline."
Another issue with interfacing arose in the early nineties when Regenstrief was connecting to other hospital systems. Every hospital had their own code system, and the names they used weren't necessarily understandable, which led McDonald to embark on yet another project – establishing the Logical Observation Identifiers Names and Codes, or LOINC, for standardizing purposes. He was also the co-founder of the HL7 message standards. 
His work, he says, is still not over. McDonald continues to dedicate his time to health information technology, now serving as the director of the Lister Hill National Center for Biomedical Communications at the National Institutes of Health, where he leads research efforts on clinical informatics and EMRs. 
When asked to describe the environment of when he first started his career developing the nation's first EMR, he recounts fondly, "There was a time when the prospective interns coming to interview would ask if we had computer – in the singular, like it's a substance, like sugar. 'Do you have computer?'" Those, he adds, were the days. 
Next page: The Ad Man

The Ad Man

By Mike Miliard, Managing Editor

Before coming to health IT in 2006, Jeff Donnell spent more than 20 years in advertising and marketing, which has given him a unique perspective on this industry.
Specifically, the ad world has offered him an interesting angle from which to approach his company's mission of driving personal health record adoption. After all, isn't encouraging patient engagement basically a form of public relations?
At Fort Wayne, Ind.-based NoMoreClipboard, Donnell is in charge of strategy, business development and marketing. Yes, he's got a product to sell. And to judge from the gains made by the NoMoreClipboard PHR in recent years – expanding market share while earning high marks for usability and interoperability – he's doing a decent job of it. 
But he's also selling a concept, patient engagement, which, for all its much-ballyhooed discussion lately, is still in its infancy. That's another area where his years on the creative side of ad teams have helped shape his vision.
"I did a fair amount of work with clients where you not only had to promote an organization and its products, but quite often had to help build the category," says Donnell. "We had a lot of clients on our roster where it would be a brand new market segment and you had to help build the market for the product at the same time you were helping build the client's brand. "
After jumping to NMC from the ad world, the first strategy was to market PHRs "direct to consumer," he says. "But we soon realized that we were way too early to a party that hadn't started yet."
Patient engagement wasn't quite yet on the radar screen for most folks. "That's where my category building experience would pay off," says Donnell. 
He knew it would be a "long, uphill battle, and require a lot of pick-and-shovel, missionary-type work." He also strategized that a rising tide lifts all boats.
"That's why early on, when Google Health and Microsoft HealthVault and others came on the scene, our approach was not to view those and others as competitors but to say, look, we're all in this together," says Donnell. "Let's make it easy for patients to move data back and forth."
Patient engagement is a concept that most folks agree is inherently worthwhile, and beneficial to health. So, in a way, there's something of a moral component to the cause as well. Interestingly, that's a force that seems to motivate Donnell – who once won a national ADDY award for a pro bono local campaign against riverboat gambling in Indiana.
Even with a fraction of the budget of the moneyed opposition, the campaign – serious, but with a slightly naughty sense of humor – changed enough minds that his "was the only community in Indiana that voted down riverboat gambling in their county."
In a way, that righteousness fuels another of Donnell's well-known projects, the long-running satire project Extormity.com – a fictitious EHR company ("at the confluence of extortion and conformity") that embodies the worst impulses of vendors: proprietary, price-gouging, pompously dismissive of workflow and interoperability.
Donnell launched the project both to call out some of the industry's worst excesses – while also getting some viral marketing on the cheap, slyly positioning NMC and its parent company Medical Informatics Engineering as the antithesis of Extormity.
"When I got involved in health IT, I was thinking it would be a noble calling, and that the entire vendor community would embrace ideas like interoperability," he says. "I was surprised when that was not the case.
"When we would go out and talk to potential clients, we had to first hear all about how horrible health IT vendors are," says Donnell. "They're expensive and their software is inflexible and they tell us we need to change how we practice medicine. Those concerns, those emotions, were so deep-seated and visceral, that it wasn't easy to overcome."
On the flipside, the industry response to the wickedly funny Extormity "has been unbelievably positive," he says. The hope is that by continuing that "left brain/right brain" approach, patients will be just as receptive to his efforts on engagement.
Next page: The Advocate

The Advocate

By Erin McCann, Associate Editor

When asked if she's against health information technology, Deborah Peel laughs. As a psychiatrist, Freudian analyst, and one of the nation's most outspoken advocates on behalf of patient privacy, Peel says it was never about the technology. 

"Technology is absolutely not the problem," she points out. Growing up, Peel observed that problems with an infinite number of variables could often be solved by computers, a lesson from her father, who was an internationally recognized computer scientist and finalist for a Nobel Prize. 

"The problem is our laws and policies and the fact that health information is the most valuable information about you in the digital age." And because health privacy laws and policies remain grossly lacking, IT has subsequently not been designed with privacy at the core. 

Peel's patient privacy advocacy saw its beginnings back in the late 1970s when she accepted the position of psychiatry chief at Brackenridge Hospital in Texas, a role which she held throughout the '80s. 

During her tenure, she saw some 10 percent of all hospital admission patients have some type of mental illness, so she spent the majority of the next decade working to increase mental health services for these patients. 

Meanwhile, during this time, Peel also watched federal healthcare funding for mental health, substance abuse and psychiatry plummet from 8 to 10 percent of healthcare dollars to a paltry 1 to 2 percent.  

Combine this with her work as a Freudian psychoanalyst, where she witnessed some of the most demoralized and discriminated against people, those with mental illness or those struggling with substance abuse, lose trust in a system meant to foster trust and improve wellbeing.  

As a practicing psychiatrist, Peel saw health plans both jack up rates and decrease rates for her patients. She'd see many apply for life insurance and be denied, all based on their mental health and substance abuse history.

"People actively managing their diseases would be penalized," she says. 

"I'm a psychiatrist and a Freudian psychoanalyst. You think anybody's going to talk to me if they think it's going to be on the Internet? They're not, and they don't." 

Another element dissuading these patients from getting treatment is the fact that they have no say over how their protected health information is shared and distributed, Peel points out. Patient consent was effectively eliminated from HIPAA in 2002, meaning that the covered entity no longer needed to obtain the patient's written consent to release protected health information for treatment, payment and operations. 

And the healthcare industry, she adds, has failed to recognize how significant these far-reaching ramifications can be.  

A 2014 Harvard School of Public Health study assessing the privacy perceptions of U.S. adults pertaining to their health data found more than 12 percent of some 1,500 respondents withheld data from care providers over privacy and security concerns. When applied on a national scale, that represents nearly 38 million people in the U.S. who withhold medical data from providers. What's more, this number doesn't even consider people who altogether forgo medical treatment due to privacy and security concerns. 

"What do you suppose the error rate is when 37.5 million people lie and omit?" says Peel. "We don't even know. They're not even studying that."

Then, there's also the 5 to 6 million people a year who delay or avoid treatment for dangerous conditions, Peel points out – for things like cancer, depression and sexually transmitted infections. 

"These two things combined mean that 40 to 50 million people in the U.S. every year are acting because they know that the systems can't be trusted, that they're not private," she says. "Those are not trivial numbers."

The healthcare industry is in dire need of a paradigm shift that considers the dangerous implications of these people who continue to mistrust the system. 

"You cannot replace this key, this critical two-person relationship, the patient and the doctor, with a bunch of technology and surveillance." And, on behalf of the patient, that's exactly what Peel continues to fight for. 

Next page: The Futurist


The Futurist

By Mike Miliard, Managing Editor

For all the progress healthcare has made with regard to technology, there's so much further we can go, says Daniel Kraft, MD.
"Because there's so much unmet need, we have so many technologies that are sort of layering up," says Kraft, a physician, biomedical researcher, inventor, entrepreneur, Stanford faculty member, pilot and flight surgeon with an F-16 Squadron of the California Air National Guard.
Kraft chairs the medicine track for Singularity University, which was founded by futurist Ray Kurzweil to speed the understanding and deployment of boundary-pushing technologies, and he's the founder of Exponential Medicine, a yearly conference (the next one is in November, in San Diego) that explores emerging and convergent technologies that can transform healthcare.
Electronic health records are only the very beginning. So many other technologies are poised to fundamentally alter care delivery, says Kraft – pointing to one instance of how disparate technologies have come together to upend another industry.
"I like to use the example of Uber," he says. "They didn't invent the cell phone, they didn't invent maps, they didn't invent online payments, they didn't invent GPS. They layered it up smartly to drastically disrupt the taxi and limo world. If that kind of thinking is applied to healthcare, it can help things dramatically improve."
If Kraft is about anything, it's about fusing different technologies and modes of thought to work toward an essential rethinking of the way healthcare is done in this country. 
"One of the good things about being here in Silicon Valley, with so many people from across the world that are innovators and thinkers, it's a convergence point for reinventing or reimagining elements of health and biomedicine, so many of which are broken today across many different systems," he says.
We're at an inflection point, that has been a long time in coming, says Kraft – who's been infatuated with technology's potential impact on this historically tech-averse industry since he first got his MD. 
"I remember when I was a med student, Apple's Newton had come out – I was thinking, 'Wow this would be so perfect for bringing in patient information to the clinical team,'" he said. "I was a technology geek. I had, in 1990, I think, the first Wizard from Sharp. It was a little hand-held calculator and pocket computer. And a Hewlett Packard 200LX as a resident – just a little computer from HP that many folks started to use to keep records and medical information."
Fast-forward to 2014, where mobile devices are ubiquitous and the apps that run on them get more creative and transformative every day.
"I think we're at a point now where there's a lot of potential given the somewhat exponential trends of smaller, cheaper, faster and better technologies. When you mash them up, interesting things can happen," says Kraft. "Google Glass is an example of that. It's a lot of technologies that you wear on your head, and probably the best use case now is in healthcare – from the OR to being a paramedic to being a nurse."
From artificial intelligence to genomics to predictive analytics, Kraft is excited about the future – especially about the ways connected new technologies are "engaging and empowering the patient, and enabling these new feedback tools to shift us from where healthcare has been forever, which is intermittent and reactive (to) continuous and proactive," he says.
"What started as the quantified self, is merging into the Internet of Things – that will take us from big data to really actionable information for the individual and the clinician," says Kraft. "That's going to drive value-based behaviors and outcomes, and hopefully align some of the often very-misaligned incentives that we have in healthcare."
Next page: The Data Maven

The Data Maven

By Bernie Monegain, Editor

Don't tell Amy Abernethy that something is impossible. The oncologist, researcher and associate professor at Duke University Schools of Medicine and Nursing, has made it her mission to go after the seemingly unsolvable. When it comes to cancer, she's convinced the answers reside in the data. It's just a matter of finding the right combination that will unlock the solutions.
"In the statistical world, we say that getting your data set right is 90 percent of the task, and everything else is now doing the analyses, which you've already planned out once you've gotten your data set right. And, this is getting the data set right at scale."
Abernethy, who spoke with Healthcare IT News from the New York City headquarters of Flatiron, a tech business that tags itself as an oncology cloud company. Abernethy had flown from Durham, N.C. to New York and reached the office before 9 on a Monday morning, proud to have arrived on time and with more ease than the week before. 
Having wrapped up some of her projects – or put them on hold for a bit, Abernethy is on leave from Duke while she serves as chief medical officer for Flatiron. 
Flatiron had tapped Abernathy to help the company find the right chief medical officer. She was in the midst of interviewing someone for the job when the candidate asked her why she didn't take the position herself. It made her pause, Weeks later, Abernethy realized she wanted the job.
The potential at Flatiron was appealing. She returns to the data to explain.
"The issue is getting the data organized and structured in a way that you can truly use it for a series of problem-solving activities," she said. "It has been the bottleneck – in cancer, but in many other places. And, Flatiron was the opportunity to try and solve that problem with top-notch engineering talent, and with enough capital to actually do it – and do it at scale." 
"So, I sit in a number of places that have been trying to think about solving this problem in different ways, Abernethy said. "It's become incredibly clear to me that this is a problem that really needed a focused health information technology approach to solve it."
In the academic world, she explained, it is harder to get the kind of funding necessary to invest in engineering that is available in the commercial realm. 
"Even if I had the money, at least in my medical school (and probably others), the ability to attract and pay engineers – it's not a pay scale that medical schools understand or are used to," she said. "We pay physicians, but we don't pay engineers like that. So, I had a very hard time essentially recruiting talent in the academic side."
She admits that with the multiple roles she plays at Duke, "the idea of doing another job seemed to be a little bit ridiculous," but some of her projects were coming to a point where she figured she could step back for a while. A leave of absence from Duke seemed within the realm of possibilities, and though it was no a slam dunk, with the advice of the chancellor, she was able to put the needed details into place.
"What I realized was that there were so many things I was doing in my day job that was chipping on the edges of trying to solve this problem," Abernethy said.
All of a sudden, she realized that the candidate, who has asked her why Abernathy herself didn't take the Flatiron job, was on to something. "Rather than keep chipping on the edges," she said, "why not step right in the middle of the story."
And, that's where we leave her – for now.