20 People Who Make Healthcare Better - 2009

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The very essence of healthcare is to make a difference for good. At its core, this is an industry focused on making life better for people. That simplicity of mission establishes a shared grounding for the millions who work daily to deliver the best healthcare they can. In our annual HealthLeaders 20, we offer profiles of some who are doing just that.

The Ugly Truth About Cost
"What the article did for me was take me into the lives of other doctors. I began to get a glimpse of what they were doing different and what might be done—good or bad—that had lessons for me and by extension for all of us."—Atul Gawande

If you worked in healthcare in 2009, someone told you to read the article. They passed it via interoffice e-mail, or twittered it, or even held a hard copy up from the podium and said that the article spoke a truth few wanted to talk about.

Even the President of the United States held up the article as required reading for those who would understand why healthcare reform is so urgent.

Even months later, Atul Gawande, MD, wonders how his article "The Cost Conundrum" in the June 1 New Yorker struck a very raw nerve. Part of what gives Gawande's mass audience writing on healthcare such heft is his blend of a physician's knowledge with a master storyteller's need to find the problem where it lives. Many had dissected the academic data on Medicare costs put out by the Dartmouth Atlas, but Gawande says that only told part of the story.

"The whole reason I wrote it is that I wasn't certain of what to make of the Dartmouth data," Gawande says. "It seemed to me that I had a second problem, which was that we didn't understand what to do about costs. I saw all the studies out there that said there is waste in the system, but when I'd try to imagine what I would do in my own practice, I was really struggling for an understanding of what was possible. What the article did for me was take me into the lives of other doctors. I began to get a glimpse of what they were doing different and what might be done—good or bad—that had lessons for me and by extension for all of us."

Gawande immersed himself in understanding how a small city of physicians in McAllen, TX, could rack up almost $15,000 per enrollee. Malpractice judgments? Nope, El Paso has the same laws and lower costs. The presence of a for-profit hospital? Nope, the numbers don't add up.

"The fact is that culture and practice matters a great deal," Gawande says. "I have been a critic of the malpractice system and do believe it is a driver, but McAllen and El Paso were two places with very similar demographics, penetration of for-profit hospitals, and similar shortages of primary care that nonetheless had a twofold difference in their cost per Medicare patient. That difference was in numbers of ultrasounds, numbers of specialist consultations, numbers of ambulance orders at the end of life, orders of CT scans, which all together translated into patterns for treatment differences. You want to blame it on this hospital or that hospital, but it's a community pattern."

The reaction to the story was reassuring to Gawande, but not just because so many people in high places referenced it. To Gawande that the reaction was so strong was an affirmation of why he writes a story: because he doesn't fully grasp an important issue and hopes his exploration of the answers is shared. "I want to understand the experiences of individual human beings, not just in medical care but in how they get along with their lives. A lot of that is driven around their health and how it is managed."

He also takes some pride in that those who chose to use his article as a point in the ongoing healthcare reform debate came from both sides of the political aisle. "They might disagree about how you solve it, but if it helps crystallize the problems that we want reform to solve in order to make care better—not just cheaper but generally better—that is what all my work is about."

So can a single widely read article influence an industry to alter patterns of behavior that have been poorly understood? The complexities of physician ordering and the cost of care are too complex for that. But Gawande hopes that his fellow physicians and others in the care stream will at least recognize that culture and practice matter. Even at Partners in Boston where he is a practicing surgeon, he now sees the value in practices he used to see as annoying.

"A practice we put in place a year ago was a system for the physician to talk to a radiologist rather than just knee jerk ordering an expensive MRI or CT scan. Those conversations have led me to recognize we didn't need to order that, we could just do this. It has reduced our cost and the unnecessary radiation and time that our patients go through. So I have recognized the value that is there and how easy it is to spend more and how hard it is to do the right thing."

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Jim Molpus is strategic relationships director for HealthLeaders Media. He may be contacted at jmolpus@healthleadersmedia.com.

Trying to Deliver Miracles
"Life is short and if you're going to work hard at whatever it is you do, you might as well work hard at the really hard stuff."—Dean Kamen

While still in high school, Dean Kamen was making money by designing light and sound systems for rock bands and museums. Pretty cool. But early on in his career, the renowned inventor determined to focus on "the really important stuff that can make a big difference to people." It is a philosophical motivation. (Part one of an exclusive audio interview with Dean Kamen.)

"I noticed a long time ago, whatever I do, I work hard at," says Kamen, 58. "Life is short and if you're going to work hard at whatever it is you do, you might as well work hard at the really hard stuff."

Much of Kamen's work is dedicated to healthcare and medical products. Among his inventions: the AutoSyringe wearable infusion pump; the Homechoice PD, a peritoneal dialysis machine that allows renal patients to receive treatment at home; the Slingshot, a portable, low-energy water purification device that could eliminate sickness and disease related to unclean water in the Third World; and the iBOT self-balancing wheelchair that can climb stairs and navigate curbs, and allows the user to "stand" at eye level.

"I could work on video games, I could work on some consumer product, but I just can't see trading a significant piece of my lifetime to do things that in the end maybe have questionable value. Maybe you could do a good job of it, maybe you could make money with it, but in the end, you won't get a drawer full of letters from kids about their grandfather who's now living at home and happy, or letters from grandmothers who are telling you about their granddaughter that's happy and healthy."

Kamen's first big medical breakthrough came about while he was a student at Worcester Polytechnic Institute and his brother—Barton Kamen, MD, PhD—was a pediatric resident. The physician talked about the challenge of administering medications to babies; the inventor had an idea. "I built a little pump for him," Kamen says. His brother's professor suggested there could be "further applications" for the device, and in 1976, Kamen founded AutoSyringe to manufacture and market an infusion pump to provide insulin delivery for diabetics requiring continuous low doses of medicine. Kamen later sold the company to Baxter International.

Kamen's latest healthcare breakthrough is the DEKA Arm, a robotic prosthetic being developed for the Defense Advanced Research Projects Agency and the U.S. Army Research Office.

Because of advances in battlefield medicine, soldiers and Marines who would have died in previous wars are surviving in Iraq and Afghanistan—but with severe injuries and loss of limbs. Kamen has developed a prosthetic that virtually reacts to the user's thoughts, an arm and hand that has the sensitivity to distinguish among and handle objects as diverse as a razor blade and a grape, all the while using a range of motion akin to a healthy, human arm. (Part two of an exclusive audio interview with Dean Kamen.)

The inventor has been to Walter Reed Hospital.

"I've spent time with our wounded warriors and it's both exhilarating and chilling at the same time," he says. "It's exhilarating to see what phenomenal attitudes they have and how appreciative they are and how much they want to keep on giving. And it's chilling to see the destruction and just the devastation of, you know, when an IED goes off in your Humvee and when they pull you out you're missing both legs, one of your arms, and one of your eyes. It's a very, very chilling way to spend an afternoon talking to kids."

Kamen lives at a hilltop estate in Bedford, NH. He often pilots his own helicopter from there to his DEKA Research and Development Corp., which employs about 300 in a renovated mill building along the Merrimack River in the city of Manchester. And he's got a private island in the Long Island Sound, not far from his boyhood home in Rockville Center, NY. But Kamen is not confined to a traditional "work place."

"It's been a long time since I was running a milling machine or soldering stuff on a board," he says. "Most of my work these days is a level of abstraction beyond actually physically getting the work done. That's sad for me, by the way, because it's a lot of fun and you get a lot of instant gratification when you actually make the stuff. But where do I do it? Wherever I am. If I'm awake I'm working. So typically I'm traveling around, and thinking."

Kamen thinks about a lot of big problems, in areas as diverse as education (he founded FIRST—For Inspiration and Recognition of Science and Technology—which this past season reached 196,000 students and involved 53,000 mentors) and transportation (he invented the Segway human transporter and is developing a hybrid car, the Revolt, which would run using a Stirling engine and lithium battery), and, of course, healthcare. But how does he decide what challenges to take on?

Essentially, it has to be a big problem, there must be a reasonable chance that the DEKA skill sets (systems engineering, controls engineering) can "move the bar in a meaningful way," and then they assess how difficult it will be to determine whether they can have an impact. "I don't even mean how much time and money will it take to finish it, but how much time and money will it take to evaluate and get a reasonable confidence as to what it will take to finish it," Kamen says. "And if it looks like in a reasonable period of time we could answer the question of probability of big success and cost of a program, and it looks all good, at the end of that process, then we start throwing people and resources at it and it becomes a project."

Despite all the success so far—the honors, the money, the drawer full of letters—Kamen says he has not yet done his best work. "I couldn't get up in the morning if I thought that our best stuff is behind us. So we're continuing to go and grow … even in this down economy, we've added a lot of people and a lot of projects and we're working on a lot of exciting stuff and a lot of great new technologies, and I think our best stuff is in front of us."

In healthcare, Kamen says "the monumental change is going to come when people really do start to appreciate the power of personalized healthcare." Proteomics and genomics are driving us there, and we'll see less reliance on one-size-fits-all pharmaceuticals.

"You're going to see that medicine can be more personalized, and at the same time, with skyrocketing costs of taking care of people after they've destroyed themselves—that's equally unsustainable—so the drive to have people take care of their own healthcare, starting with eating well, and exercising well, and not being obese, and doing preventive maintenance on their bodies, all of that is driving toward individual personalized care by the physician and perhaps more importantly individual personalized responsibility by patients."

That theme of personal responsibility is essential to Kamen's vision. "We're going to have to stop assuming we are recipients of magic from ‘them'—whoever the ‘them' is, whether it's the insurance company or the government or your doctor. There's no ‘them' out there. It's going to be a world where people are responsible, they are not recipients; they're customers, they're patients, and they're going to be involved in preventing diseases and hopefully treating them more effectively than passively being the recipient of a process."

That may seem like quite a ways off to most people. But Dean Kamen—the inventor, the entrepreneur, the thinker—does not despair.

"I get passionate about trying to solve a problem. I've got some really, really smart people here that will jump all over trying to deliver miracles. It's fun, it's exciting, and when it works, it makes us feel pretty good about ourselves and the future."

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Bob Wertz is managing editor of HealthLeaders magazine. He can be reached at bwertz@healthleadersmedia.com.

Pushing patient-physician participation
"It's really good for you to have a sense of connectedness and a sense of being supported,"—Dave deBronkart

Dave deBronkart is the quintessential engaged patient consumer the likes of whom—depending on your viewpoint—is either an anomaly or an inevitability.

A New Hampshire resident, he was willing to drive to Boston to receive what he considered to be the best quality care. And, although he says his doctor at the first well-known institution he went to was fine, he wasn't satisfied with the hospital and its other workers, who had what he calls a shoulder-shrugging attitude. So he "dropped a note" to Paul Levy, president and CEO of the 621-bed Beth Israel Deaconess Medical Center (BIDMC) in Boston. And Levy wrote back, recommending a doctor who was known to enjoy working with engaged patients like deBronkart and for teaching his colleagues to work with engaged patients as well.

Daniel Sands, MD, has been deBronkart's physician ever since. They've created a partnership that goes beyond the doctor-patient relationship—they've also championed patient rights, participatory medicine, and the use of technology to improve doctor-patient communications. They are advocates for a new doctor-patient dynamic, one that values input from both parties. And they are big proponents of improving the patient experience at hospitals nationwide.

This year, HealthLeaders magazine includes both of them on our list of 20 people who are making a difference in healthcare.

In 2007, deBronkart was diagnosed with stage four kidney cancer. Sands introduced him to the cancer-support site Acor.org, which has an online chat room for kidney cancer patients.

Soon after, deBronkart was invited to join a meeting of an e-patient scholars working group—of which Sands was a member. After that, deBronkart became an active blogger on e-patients.net and took on the online handle that many know him by: ePatientDave.

"My life just pivoted like on a railroad turntable at that moment."

Now deBronkart often works late into the night, spreading his patient empowerment message in chat rooms, on blogs, via Twitter, and in other forums. More recently, deBronkart and Sands became co-chairs of the board of directors for the Society for Participatory Medicine, another e-patients.net offshoot. Through all these venues, deBronkart's main message reverberates: Patients have the right to know and pursue their options. He believes that "great doctors saved my life," but patients can and should contribute to their own care.

Participatory medicine is even more important when you're seriously ill, he says. "It's really good for you to have a sense of connectedness and a sense of being supported," he says. "There was a moment when I wrote to my oncologist with a great concern about something I'd read in one of my radiology reports. Long story short, I had misunderstood because I didn't know the technical vocabulary."

When the oncologist explained the report, deBronkart apologized for taking up his time.

"I'll never forget what he said. His response was 'I am happy to field your questions,'" deBronkart says. "It was a terrific feeling."

As for whether or not engaged patients are an anomaly or an inevitability? "All I can say is we're spreading the word," says deBronkart. "And sooner or later everybody will be headed to our party."

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Gienna Shaw is senior editor for marketing for HealthLeaders Media. She may be contacted at gshaw@healthleadersmedia.com.

Early advocate for patient e-mail, engagement
"If I had my druthers, I would take care of only patients who are engaged."— Daniel Sands, MD

This may come as a bit of a shock, but some doctors are egotistical, paternalistic, doctor-knows-best kind of physicians. Their patients want to communicate with them via e-mail? Too bad. Their patients saw something on WebMd or Medscape that they'd like to discuss? Hey, who's the doctor, here, anyway? Their patients want them to spend more than seven minutes on their office visit—or would at least like to know why they only get seven minutes? Sorry, the doctor is too busy to talk about that. Their patients don't like sitting in a chilly exam room wearing nothing but a paper gown without being told when the doctor might deign to appear? Well that's just the way it is.

And then there are physicians like Daniel Sands, MD. "If I had my druthers, I would take care of only patients who are engaged," says Sands, a physician at the 621-bed Beth Israel Deaconess Medical Center in Boston. "I've always been interested in what we now call participatory medicine. It's the way I like to practice."

From writing guidelines for communicating with patients via e-mail to helping to develop clinical decision support systems and patient portals, Sands is also a huge advocate of using technology to improve the patient experience. And he can only be described as an early adopter.

In 1998, he published guidelines for the clinical use of "electronic mail" between doctors and patients. In 2003, he co-authored a study of physicians who were using e-mail to communicate with patients. The most consistent theme, the authors wrote, was that e-mail communication enhances chronic-disease management. Many physicians in the study also reported improved continuity of care and increased flexibility in responding to nonurgent issues.

And yet, more than 10 years later, physician use of e-mail to communicate with patients is not widespread, a fact that he finds "amazing."

"We can really use these technologies to augment the doctor patient relationship," says Sands, who is also senior medical informatics director at Cisco Systems Internet Business Solutions Group in San Jose, CA.

One of Sands' patients is Dave deBronkart, the patient-engagement advocate who was also named to this year's list of 20 people who are making a difference in healthcare. "Why there isn't more widespread adoption of simple everyday online business practices I don't know," deBronkart says. "These days, I won't take a new doctor … that won't take e-mail."

Culture is just one of the reasons physicians are hesitant to adopt new communications technologies, Sands says. "Doctors, particularly the ones you see most regularly, are struggling with managing complexity in their daily lives and their practices," he says. They worry that change will disrupt the way they do things and add a new layer of complexity—e-mail is just another thing to do.

But asynchronous communication—whether via e-mail or a secure messaging portal, for example—is more efficient than face-to-face or telephone conversations for certain issues, Sands says. With phone calls, for example, a physician shouldn't call too early in the morning or too late at night.

"One benefit to e-mail is that Dave can send me a message when it's convenient for him and I can respond at my convenience," Sands says. "He can take time composing his message. And I can take time to respond."

When a patient leaves a doctor's office or hangs up after a phone conversation, he or she only remembers about half of what the doctor said, Sands says. With written communication, there's a record for both parties to refer back to.

Which may be what worries some doctors—the idea that if they make a mistake it is writ in stone. But, Sands argues, more information is better, even if you've done something wrong.

"When we're better communicators, we don't get sued as much," he says.

All this is not to say that technology is a panacea or even that it provides the perfect communications medium. You do lose information when communication is not face-to-face. But people have been communicating in writing for thousands of years, Sands points out. "We just have to understand what the limitations are."

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Gienna Shaw is senior editor for marketing for HealthLeaders Media. She may be contacted at gshaw@healthleadersmedia.com.

See Profiles 5-8.

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