‘Data Is Democratizing and Empowering’
Karen DeSalvo was a professor at the School of Medicine and Public Health at Tulane University in New Orleans when Hurricane Katrina struck the city. The university was forced to close and many of its faculty, staff, and students to relocate to Houston. But DeSalvo went back to New Orleans to get clinical services up and running.
“We quickly began setting up services that didn’t look much like what we had before,” she says, establishing a network of community health centers across the city and region. When Tulane reopened, DeSalvo continued to teach, and eventually became vice dean for community affairs, but continued working with communities and with policymakers to rebuild. “There’s not really a job title for what I was doing,” she says.
In 2011, six years after Katrina, newly appointed governor Mitch Landrieu invited DeSalvo to become the city’s health commissioner—and overhaul a health department that had been struggling even before the storm.
She accepted, and made the New Orleans Health Department one of the nation’s first health departments accredited by the Public Health Accreditation Board. Her work in New Orleans caught the attention of the US Department of Health and Human Services (HHS), where she went on to serve as national coordinator for health information technology from 2014 to 2016 and acting assistant secretary for health from 2014 to 2017.
“The work in New Orleans after Katrina was so tangible,” she says, “but the work that I got to do at HHS around freeing up data stands to make some pretty significant changes in our approach to medical care and to public health. The time horizon on that impact is a little longer, but three to five years from now I’ll be able to say, ‘It did make a difference.’”
In January of 2017, DeSalvo left HHS and returned to the private sector. She is now professor of medicine and population health at the University of Texas at Austin Dell Medical School, where she continues to work on a range of projects seeking to leverage technology and digital health in community health, medical care, and research on the social determinants of health.
DeSalvo is a member of the National Academy of Medicine and was a recipient of the Surgeon General’s Medallion, the highest honor bestowed by the US Public Health Service. She holds a medical doctorate and a master’s of public health from Tulane University, a master’s in clinical epidemiology from the Harvard T.H. Chan School of Public Health, and an honorary doctorate from her alma mater, Suffolk University.
What was your experience in the aftermath of Hurricane Katrina?
Like nearly all of the city, Tulane shut down. The school relocated to Houston, and to other places where we had trainees. But I went back to New Orleans, ground zero, to work on reestablishing our clinical services for the school’s benefit and for one of our hospital partners, Tulane Hospital.
You had to see a path forward in all that chaos, but also keep yourself positive and focused when it could be pretty easy to get negative. The country wasn’t always supportive or behind us. We had a lot of headwind from the establishment that wanted to focus on building hospitals and not really think about prevention. As hard as that was, it was very empowering because the community was really, in many ways, working well together.
You wound up overhauling the New Orleans Health Department. What did that involve?
We had a consultancy assess the city government, including the health department, and they said it was the most dysfunctional government they’d seen in their 25 years of consulting. We had walked into a little bit of a mess—a lot of a mess—and had a great deal of work to do just to right the ship all across the city government, including in the health department.
We used the accreditation process of the Public Health Accreditation Board as the blueprint to improve the health department. The goal was to become one of the first accredited health departments in the country. I thought that would be an important gift for the city, being part of the strongest healthcare structure going forward.
At the time, it was really clear to me that all the good work we had done to build back a stronger healthcare infrastructure was just the beginning. We would need to address all of the determinants of health and be able to work with all of the factors to get transportation and housing and the criminal justice system and everything else working in concert.
Public health, and the health department in particular, was a natural, neutral convener of all those factors, all those vectors, to create a healthier environment and do some systems-level change. I was interested in fixing the health department not only for its particular responsibilities and duties but to establish it as a leader in the community.
We were working hard, but we were doing it in partnership with others as a team. The community was really welcoming and engaged and came to our community meetings and our focus groups and participated in all the new efforts that we started. It was a nice time, honestly, and, at the end of the day, we had a lot of successes.
Why the shift from community-focused work in New Orleans to information technology work at HHS?
That’s exactly what I asked when they called me to come take the job. I said, “I think you have the wrong number. I’m not a technology person.”
Then-Secretary Kathleen Sebelius and her team wanted somebody who had been applying technology in the field, someone who wasn’t just thinking about it for technology’s sake but for improving the health of individuals and the health of communities. I had been doing that in our work after Katrina in a variety of ways—I had been intimately involved in these three big grants that came out of the Office of the National Coordinator—so as I thought about it it began to make sense.
Also, when I was health commissioner, I was frustrated—that might be too light of a word—I was often aggravated because I couldn’t access health data on our community. The hospitals and the clinics wouldn’t share it. I couldn’t say, “In this particular housing development or school there’s more asthma expression, and that’s where we should target environmental assessments and air quality interventions.” I just felt that there had to be some reason why this data blocking was occurring.
I walked into HHS with experience in the clinical world but also with this negative experience in the public health world, and a real drive to make sure that the investment that the country made in these tech assets, some $37 billion, would be used not just for treatment but for prevention.
Why was making these data more accessible so important to you?
Data is democratizing and empowering.
Health data, whether it’s health care or claims or even public health data, is hoarded, and the people that want to do good in the community don’t have access. We don’t have a “data commons” model in this country yet, where community organizations can pull their data and then be able to better see how the community works through these gaps or needs or opportunities.
Now the healthcare system owns the data or the federal government does, but we’re moving to a world where data sharing is the cultural norm and/or the law. It gives not only individuals but communities access to data, and it empowers them to begin to make change and to drive agendas. It allows for collective impact, for collaborative community work.
All of this is exciting to me because it brings public health back to the table. Public health is sophisticated with data collection, data interpretation, data use, and it approaches data and actionable information without the same kind of agenda that healthcare or a health plan has. It really strengthens the role and opportunity for public health to bring people to the table around shared goals, and take action that’s more timely, with everyone working together and seeing the progress they’ve made.
How did you feel leaving HHS during the transition between administrations?
The last year has been very exciting but also difficult. When you’re at HHS in the roles that I had, you have some sense that you can do good and make a difference. It was an interesting experience to step away from having your hand on the tiller and go to the sidelines and watch.
The policy work that I did at HHS was very deliberately nonpartisan, evidence-based, and designed to create a pathway that would make sense for the people on the front lines over time. I was worried that the new administration would change course.
There was a little bit of that at the very beginning, but by and large they have continued that pathway of value-based care, data sharing, and liquidity, making sure it gets into consumers’ hands and that it’s available for advancing public health and thinking about social determinants, including the opportunities for partnerships between, for example, business and public health as the surgeon general is talking a lot about. Once the policy world up there settled out, we seemed to be moving in the same direction.
But the thing that I still watch for the most is that we hold the line on vaccines. There are things that we’re going to lose ground on that are important for health, like civil rights and access to affordable health insurance, but we cannot afford to lose ground on vaccines. There were some early signals that we might, but we are not going to. The team that’s in place at HHS, whether that’s at CDC, FDA, or the assistant secretary for health, are clear about vaccines mattering.
Without giving away too much of your convocation address, what advice do you have for our graduates?
They need to be a part of something bigger than themselves, and they need to remember to enjoy the journey.