Karen DeSalvo has a vision for health care in the United States. It’s one in which sick patients don’t have to interrupt their drug treatments every time they switch hospitals, and in which health care providers aren’t hindered by bureaucracy and outdated file keeping. Digitizing medical records, she believes, enhances the work doctors already do.
As the national coordinator for health IT, it’s DeSalvo’s job to inch her vision closer to reality. The internal medicine specialist took office a little over a year ago -- 10 years after President George W. Bush's administration created the Office of the National Coordinator for Health Information Technology, and five years after the Health Information Technology for Economic and Clinical Health Act of 2009 gave the Department of Health and Human Services authority to promote electronic health records and the exchange of digital health information.
“The data coming out, and being put to use is where [health IT] gets exciting,” DeSalvo says. “When public health can show you that as a mom, your kids’ immunization records are available to you on your smartphone, and you don’t have to go and get paper from an office and miss work, that’s big.”
Electronic health records have attracted increasing federal attention; Congress has been eager to speed their adoption, potentially reducing operational inefficiencies in health care systems. Several teams of technology companies including Epic and IBM, and Computer Sciences Corp and HP, are vying for a $11 billion contract to revamp the Pentagon’s health records system.
Earlier this month, ONC issued a report to Congress suggesting health care providers and IT developers might be blocking the flow of patient records to competitor health systems because they have a vested financial incentive to retain patients.
As a young girl growing up in Austin, Texas, DeSalvo never planned to lead the country’s health IT modernization efforts, she says -- she just wanted to be a doctor. Today, the former health commissioner for the City of New Orleans (she worked there between 2011 and 2014) says her path to Washington has been shaped by a lot of luck, a penchant for being scrappy, and a firm belief that technology can solve many of the challenges health care providers face today.
The War Zone
The weeks following Hurricane Katrina cemented her appreciation for technology in health care, DeSalvo says. In 2005, DeSalvo was Tulane University’s vice dean of community affairs and health policy, managing a staff of doctors cleaning up in the storm's aftermath.
The storm hit while she was vacationing in Alaska, she says. When she returned to New Orleans, tens of thousands of people had not been evacuated. Many of them desperately needed medical attention.
“They were the sickest of the sick, the poorest of the poor,” DeSalvo says.
In addition to New Orleans residents, there was an influx of volunteer first responders, police and Federal Emergency Management Agency staff, among others.
“They didn’t come with their own health care," DeSalvo says.
She noticed a stark difference between how the Veterans Affairs hospital handled the influx, compared to Tulane and the public hospital where she worked. VA had electronic health records, so even when the facility was closed, doctors could pull up a list of who was on blood thinners, or what cancer treatment regimens they were on, she says. Doctors could then see those patients out of mobile units, even if the main facility was closed.
But other health systems couldn't do that, as they relied mostly on paper-based records, she says.
Patients with diseases such as HIV and tuberculosis needed refills on their medication, others needed to monitor glucose levels. Some needed to talk to counselors, or wanted to know if their water was safe to drink, among other physical and mental health concerns.
Without a robust record system, she says, it was difficult to follow up with patients.
“We were panicked because we didn’t know how to find the patients we we needed most," she says. "It was really scary . . . it crystalized for a lot of us -- me in particular -- we have to have a registry of our patients to have to be able to know who is at highest risk and keep the continuity of their meds."
Shortly after the storm, "the world was completely falling apart -- the 82nd airborne military was there with machine guns in my city. You have to understand that we were under siege by water, by people trying to protect us, with the military, there were tanks in the streets. ‘Panic’ is not a world that would seem unusual,” she says, adding, “you felt like you were in a war zone.”
For the first few weeks, DeSalvo said doctors didn’t have electricity, potable water or a sewage system. And for the first six months, they also lacked a functional laboratory to process tests and instead used ice chests to store the vaccinations they doled out.
“It really made you go back to your roots,” she says.
Shortly thereafter, she founded the 504HealthNet Network, a cooperative association of 22 New Orleans-based health care providers which, among other missions, intended to coordinate their health IT systems.
A ‘Naive Decision’ to Enter Medicine
DeSalvo has been interested in public health for much of her career, she says.
“I think that the notions of being engaged in issues like equity and access were natural to me, having grown up poor,” DeSalvo says.
Her father left her family when she was young, and her mother had raised DeSalvo and two other siblings in Austin alone.
“We didn’t have a lot," she says.
Her path to medicine began when the aspiring dancer, then a teenager, decided not to audition for the New York Ballet.
“I didn’t want to leave home, I didn’t want to have a career that was so physically intense, and where everyone I worked with would be my competitor, so I said, 'OK, I’m not going to be a dancer,'" DeSalvo says.
Around the same time, she had done a report for school on radiation oncology, as her mother worked as an office manager for a radiation oncologists. DeSalvo went into the office with her mother and watched doctors taking care of cancer patients.
“It seem[ed] like a nice career . . . it was literally that naive," she said. "And so I decided I was going into medicine.”
What she loved most about medicine, she says, was that “I get to apply science to helping people . . . it sounds a little Pollyannaish, but that really is what it is.”
But in the 1970s, when she was a teenager, “little girls from single-parent households didn’t go to med school,” DeSalvo says. “Especially if they weren’t valedictorian, because I was not a shining star when I was younger.”
She had been working various jobs, including waiting tables, since she was 13; she put herself through college and medical school at Tulane. The job that really propelled her into medicine, DeSalvo said, was at the State Laboratory Institute while she was an undergraduate at Suffolk University, analyzing paralytic chemicals in shellfish.
“I’d literally get up at 4-5 in the morning, drive in a state car to the shore in Massachusetts, go clamming, collect mussels and clams and quahog, shuck them, grind them up, extract potential poison, inject them into the bellies of little white mice, and then see if any of them died from the neurologic complications,” she says. “I still can’t eat shellfish.”
Though she hated the job, she learned chemistry concepts that helped her in medicine later. The lab kept her on to do data entry; she later ran the HIV testing line, compounding her interest in public health by serving as a testing counselor in the 1980s.
DeSalvo is rarely not busy. On weekends, she travels back to New Orleans where her husband and her 9-year-old rescued yellow Lab mix, Abita, live, and where she still sees patients. In addition to her health IT work last October, DeSalvo assists HHS Secretary Sylvia Burwell with the U.S. response to the Ebola outbreak.
Though she encourages women to enter the sciences, DeSalvo said she’s never identified herself a “woman in medicine." Especially after medical school, where women made up between a quarter and a third of the class, she’s used to being in the minority.
“I had to just stay steady and not worry about whether or not they had bias because of my gender,” DeSalvo says. “What I could do is make sure that I was professional and that I followed through on the kinds of accomplishments [male and female peers] would respect.”
DeSalvo still faces challenges, including convincing health care providers nationwide to invest in robust electronic records and health IT systems. But as she wraps up her first year in the federal government, she says, wryly, “being here is the most resource-rich environment that I’ve ever been in."
Her agency operates on a relatively small budget -- the president's 2016 budget request allocates the group $92 million. "I think that never is an issue for me," DeSalvo says. "I like the notion of being scrappy.”