Editor's note: This is the first in a series of stories called "Profiles in Health" - a look at how health care leaders experience the American health care system as consumers and patients. The series is part of the Healthy States project, American Public Media's focus on information, insight and experiences in health.
By Jennifer Vogel
At the kitchen table of his large, sunny house in Mendota Heights, Edward Bergmark drinks strong black coffee from a stained mug, a hint of the morning's bacon in the air. He's surrounded by unhung pictures, stacks of neglected paper and bedrooms doubling as storage lockers, giving the place a half-lived-in feel.
Bergmark's two grown sons were raised here. This is also where he cared for his wife Sally for nearly a decade after she was paralyzed from the neck down in a body surfing accident in California in 1997. "This was the day room," Bergmark says matter-of-factly. In essence, this part of the house, which he custom built with big windows, spacious hallways and wide entries to suit his wife's reclining wheelchair, served as a hospital. He even installed an elevator so she could go upstairs.
"We don't have health care in this country. We have sick care. We're completely out of balance."
These days, Bergmark, who is 63 and a psychologist, isn't home much. That's not because it's hard to sit amid baleful memories, but because Bergmark doesn't like to sit at all. He'd rather work.
He's spent four decades trying to push the health care system in new directions, away from so many tests and procedures and toward innovations that keep people healthy in the first place. "We don't have health care in this country," he says. "We have sick care. We're completely out of balance."
Bergmark is chief executive of Twin Cities-based American TeleCare, which is expanding the use of remote medicine to monitor heart rates and other vitals and provide doctor visits via the Internet. He's also on numerous boards, including the Chicago School of Professional Psychology and Oak Street Health, a network of Chicago clinics looking to reshape the way care is delivered by creating financial incentives for keeping people healthy and out of emergency rooms.
He grapples with one big, all-encompassing question: "How do we move beyond the anecdotal and the hysterical and think about how to address health issues and life issues in a more constructive and more economically-responsible way?"
Toward that end, in 1990, Bergmark launched a service called Optum as part of UnitedHealth Group. The founding idea was to help people solve a wide range of problems, including some that typically fall outside the purview of traditional medicine, like domestic violence, legal tangles and job and financial stress. We hear a lot these days about "treating the whole person," but back then, it was a fresh idea.
A decade and a half later, around the time Bergmark left UnitedHealth and cashed out his stock, Optum was serving 24 million people. It has continued to expand and transform and today it serves 60 million around the globe. "My timing was unbelievably lucky," says Bergmark, who was made wealthy enough to buy his own plane, which he pilots. "It's always better to be lucky than good."
Bergmark grew up in Jackson, Miss., the son of a musician mother and a father who was a Methodist minister and philosophy professor at Millsaps College. His dad fought for desegregation at the height of the civil rights era.
"There was a lot of violence," Bergmark says. "We would worry whether he would make it home. He had the first African-American student at Millsaps College at a time when that was a pretty dangerous thing to do."
The experience imparted in Bergmark an awareness of social systems and a desire to change them for the better, says his older sister Martha Bergmark, an accomplished civil rights lawyer recognized by the White House as a "Champion of Change."
"I would go back to those early Mississippi experiences, the kind of turmoil that was happening in a society at war with itself," she says. "That experience was really formative. As children, we started thinking more politically and systemically than we would have had we grown up in Nebraska."
To a young, headstrong Bergmark -- he was fired from an early job for refusing to cut his hair -- Mississippi felt stifling and backward. He couldn't get away fast enough. He won a scholarship to Macalester College in St. Paul and from there attended the University of St. Thomas and the University of Minnesota, where he earned his psychology Ph.D. in 1988.
Like his dad, Bergmark is driven by the desire to create impact. But unlike his father, who believed "education would solve all problems," Bergmark views human nature as more complex and contradictory. Sometimes people act against their own best interests, no matter their education.
"You can think that people ought to love one another and be kind," he says. "But if you look at human history that is not how humans behave. I was very interested in what are human beings and why do they do what they do. Instead of listening to what they say, watch their feet."
That sort of show-me-the-proof empiricism is bedrock Bergmark.
"He is one of the very smartest people I know and one of the hardest working people I know," says Phil Dell, a longtime business partner and Optum collaborator. "He is the glass-half-empty guy and I am the glass-half-full guy. It's the perfect combination. Edward always asked the hard questions, which was good. It was always about what was actual and real."
"Under that," Dell says, "is his compassion for people. He wouldn't ask the hard questions about whether this will work if he didn't see that it could make a difference."
Bergmark asked a lot of hard questions while caring for Sally, a teacher, whom he met at Macalester when they were both 18. The two married and had three children, one of whom died in infancy. Their sons were just 13 and 14 when Sally was injured in the body surfing accident.
"We were on a family vacation, staying in a hotel in Santa Monica with a beautiful room looking over the ocean," Bergmark says. "We loved to body surf and boogie board. We just loved the ocean." Talking about the accident still brings tears to his eyes.
Trouble arrived as two men dragged his limp wife, her face bloodied, from the surf. Her first words to her husband were, "I can't move anything. Will I be this way the rest of my life?" He remembers responding, "I don't know. But I'll do everything I can for you." He knew at that moment she'd never walk again.
"I think it's very hard for most of us to recognize when things have changed completely," he says. "And I think for better or worse, I seem to recognize reality more quickly than a lot of people do."
"How do we move beyond the anecdotal and the hysterical and think about how to address health issues and life issues in a more constructive and more economically-responsible way?"
Immediately, he began marshaling the needed personal and medical forces. He would spend the next nine years in a state of "I can't go on, I must go on," navigating a maze of doctors, hospitals, long-term care facilities, rehabilitation centers and home health attendants, from California to Minnesota to Georgia. If not for his financial resources, solid health insurance and working knowledge of the health care system, "She would have just been dead," he says. "That is the simple answer."
For example, early on, when he noticed that Sally had fallen into a stupor in her hospital bed, he ignored reassurances, sought a second opinion, discovered that she was having a toxic reaction to a medication and had her moved. He eventually found Shepherd Center in Atlanta, one of the best spinal care facilities in the country, which weaned her from a breathing tube and paved the way for her to return home to Mendota Heights.
Once she was home, Bergmark oversaw and paid for around-the-clock attendants, something the average person could never afford, since standard health insurance typically doesn't pay for long-term care. He views this as another way the system is out of whack.
"The way I think of that time is Edward running 24/7 to be a dad and husband and go to work and earn a living for the family," his sister says. "I saw him do that pretty amazingly successfully under incredibly adverse circumstances. He did it with such grace and courage."
In 2006, when Sally died, Bergmark, to his own surprise, felt utterly defeated. "It was sort of like, this was the biggest game of my life and I got totally beat. She never had a good quality of life. There were some moments here and there. But it was never, we've turned the corner, we've got this. It was a long hard painful slog for everybody and then it ended. It's just life."
This knowledge drives Bergmark's work as he searches for ways to improve life for disabled people and put health, not sickness, at the center of care.
Take his efforts in telemedicine. "For most people, a hospital is a seriously depressing place to be," he says. When it came to Sally, it took at least two hours to get her ready for a trip to the doctor for a consultation. "What an unbelievable production it was." But if they'd been able to see someone via computer, "It would have been so much better. It just makes so much sense."
Bergmark is chipping away at that big, all-encompassing question, believing that, piece by piece, we can invent our way out of problems plaguing the health care system. "We are going to do what democracies do and that is stumble toward something that we hope ultimately makes a little more sense," he says.
"It's an iterative process. The body of evidence of better care more efficiently delivered it is just going to have to build over time."