When Karen DeSalvo was first asked to interview for the role of National Coordinator for Health IT, she declined, thinking it wasn’t the right fit. After, she lacked the technology expertise that other candidates could offer. What she did have, however, was experience as both a physician and a leader, having spent the prior three years as Commissioner of Health for the City of New Orleans. And so DeSalvo followed her own advice and ran toward the opportunity to make a difference. In this interview, she talks about what she enjoyed most about her role with HHS, why she has become a crusader for public health, what she’s doing now (and hopes to do next), and why it’s critical to “find your true north.”
- From public official to student
- Turning down HHS: “I didn’t think it was the right job for me.”
- ONC’s “inflexion point”
- Writing the interoperability roadmap — “It’s the currency of today.”
- FHIR’s potential
- Working with Micky Tripathi & Dave McCauley
- Reflecting on her time with HHS — “You have the opportunity to think big and do big things.”
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It was a really interesting time of closing out what we had started with grants, helping the team on a pathway of defining what the future would look like, understanding what the value was for taxpayers, and also helping to make sure we didn’t get too far ahead of communities that still had to put the building blocks in place.
Data was going into systems, but it was hard to get out. That was contributing to the frustration of doctors on the frontline who felt like they kept entering data into these EHRs, but when they needed to know somebody’s vaccine history, they couldn’t find it.
Health IT is still pretty much in the adolescent phase. It’s still a little lanky and awkward and tripping over itself, not really always playing nice with others and has some maturing to do.
I don’t think we’re out of the woods on expectations, and I think the industry needs to pay a lot more attention to system usability.
When you’re in public service at the federal level, you have the opportunity to think big and do big things. Certainly you do in the private sector as well and at the state level, but there is something pretty exciting about being able to decide, in partnership with the health IT community, that it was time for APIs to be a part of usual practice.
DeSalvo: Hi Kate, I’m happy to be here.
Gamble: I want to talk about your experience as a national coordinator and acting assistant secretary, as well as some of your work prior to that. But first, can you talk a little bit about what you’re focused on right now?
DeSalvo: I am officially on hiatus. I’m staying busy with opportunities to speak and participate in conferences, which honestly has been quite nice, because you’re pretty busy when you’re in public service. Sometimes I would speak in a meeting and only be able to stay as long as I was hearing myself speak and not have a chance to listen to others. So I’ve really enjoyed the opportunity in these last few weeks to reflect and listen to what the world has going on and where it’s going. I’m really looking forward to finding more opportunities to be able to keep working at the intersection of healthcare and public health and technology, which is where I spent most of my time at HHS. I think there is some very exciting work and opportunities happen in the US. I’ve been more like a student than anything lately, and it’s just been a delight.
Gamble: That sounds great. Now, looking at your time as national coordinator for Health IT, you did that for about three years, starting in January of 2014, correct?
DeSalvo: That’s right.
Gamble: What was your mindset going into that role? Some of the major building blocks were in place for Health IT adoption, but there were certainly a lot to be done. So how did you approach stepping into the role?
DeSalvo: When I got the call to interview to be the national coordinator for Health IT, I told them thank you very much, but I really didn’t think it was the right job for me, nor was I the right person. That was largely because I’m not really a technologist. I’m a physician and a leader who has applied technology in clinical practice and in public health. But as I talked more with the team at HHS, it became clear to me that what they were looking for was a leader who could apply the technology to the important work that the secretary or the president and frankly the country needed and so my mindset was, ‘boy, I have a lot to learn about technology, and also the team.’
That time in history for was a point of inflexion for ONC. They were just pivoting off of the HITECH money, the huge infusion of funds through ARRA. They had put out billions of dollars in grants and were well underway in the Meaningful Use program, and that had changed the staff structure and the daily work of ONC, but those funds, as expected, were ending.
And so I walked into ONC in January of 2014 with an understanding that the organization was about to undergo a transformation so that it could meet the expectations of becoming a policy shop once again. It was really thinking about how to take the building blocks that were in place from the HITECH funding and from the work that was happening in the private sector and the partnership with Medicare, and put that data to use. So it was a really interesting time of closing out what we had started with grants, helping the team on a pathway of defining what the future would look like, understanding what the value was for ONC to the taxpayers, and also helping to make sure we didn’t get too far ahead of communities that still had to put the building blocks in place and still needed support just while we were trying to help the innovators on the other end of the spectrum begin to put that data to use.
DeSalvo: Yes. In terms of the interoperability component, some of the frustration I was hearing really early was not just from the Health IT developers, but docs and other providers from the team — and what I brought with me from the ground — was that data was going into systems, but it was hard to get out. That was contributing to the frustration of doctors and others on the frontline who felt like they kept entering data into these EHRs, but when they needed to know somebody’s vaccine history, they couldn’t find it.
And as everybody is aware, the consumers were also quite frustrated. I think they had an expectation, even as early as 2014, that if my data are available in banking and other sectors, why is it not readily available to me now? The list of people who wanted access to it just keeps growing. I came directly from public health, and it was a source of frustration, but also an opportunity I saw to really better survey the community’s health needs. And scientists, as we’ve all seen, even more acutely in the last couple of years, really want access to that information to improve the public’s health.
So I thought that interoperability needed to be where we should shift our focus. The team was already moving there intellectually, and we were able to lift our heads up from the Meaningful Use papers and think about not the implementation of EHRs and data, but really how do we begin to put it to use. In the longer journey of that, there are two processes that happened.
One was that we wrote the interoperability roadmap, and did that with the public and private sector. We also were concurrently writing the Federal Health IT Strategic Plan; the roadmap was really just sort of part of the overall plan. I was lucky when I stepped in then because it was time to refresh the Federal Health IT Strategic Plan, which is one of the congressional expectations of the National Coordinator. We were able to bring together more than 30 Health IT agencies and agencies from across the federal government to say what are our priorities, and just like we were saying at ONC and I was hearing from the community, whether it was DOD or VA or STC or USDA or NASA, it was that interoperability as a priority, and so let’s move on that really quickly.
But quite frankly, the excitement around data interoperability — not just system interoperability, but that data piece — is because it’s the currency of today and into the future. It really has a lot of excitement and opportunity around it, because it means you’re not just pushing data out; people want to pull it, because they want to put it to good use.
Gamble: You touched on expectations. When we interview CIOs, that’s a point that comes up a lot in terms of clinicians and patients and managing those expectations in a sensitive way. That can’t be an easy thing to do when people know what’s available in other industries. I’m sure it’s a struggle to try to manage expectations.
DeSalvo: Yes, it is. Health IT is still pretty much in the adolescent phase. It’s still a little lanky and awkward and tripping over itself, not really always playing nice with others and has some maturing to do. But it’s come so far. Even in the last year, I’ve felt a big turnaround.
Usability still is a challenging issue, but physicians are more comfortable learning to use macros or the level of appreciation of the technical components of EHRs, and younger physicians are coming into the workplace that are more comfortable with technology and are teaching up to their more senior peers. The technology itself is available on more kinds of devices. It’s more mobile-accessible. It’s more internet accessible. I think we’ve done a better job of getting that extra data out of the CCDA of summary tools. They’re still pretty dense, but the systems are getting better at filtering the important clinical information.
But I don’t think we’re out of the woods on expectations, and I think the industry needs to pay a lot more attention to system usability. The payers, whether they’re public or private, have a big responsibility in this, because expectations about documentation and compensation based upon that drive a lot of the complexity in the health system. We have important technical work to do to get things like care plans that are shared documentation templates that work better for everyone so that you’re not reading everybody’s notes on the team, but people can contribute. These are things we’ve done on paper. It’s just that some systems are doing them decently, but it’s not everywhere. I think for most private practice docs and small group practices, and from those smaller facilities like nursing homes, the technology systems is sort of still the source of frustration. It will not stay that way, but I do know that the expectations haven’t quite yet aligned with where the technology is in terms of support for people’s work.
Gamble: Right. I’m sure our CIOs will echo that. Looking back at the role — which at first you weren’t sure was the right fit — what did you enjoy most about it?
DeSalvo: I loved the team. I love the passion and the energy and innovation from the Health IT community. It’s a great set of people who are incredibly smart about their content area, very interested in bridging with other sectors — public health, preparedness folks. They always want to learn and build things, and they are very passionate in all the best ways. So when they believe that a pathway is the right way. And they’ll stick to that pretty hard, but as soon as they learn — through a lot of willingness to grow and evolve — that any pathway is a better way, they jump right on that.
I love to use the example of FHI and API. The JSON work started very early when I got to ONC. We were talking about interoperability and how do you free the data, not just make every system have to talk to it. I was new to some of the technical aspects of health information technology, and I read a piece about FHIR, probably in February of 2014. I called Doug Fridsma on a Sunday and asked, ‘what’s this about? Is this hype real? Tell me more about it.’ I also received the JSON report on the API model. Thinking of these things together, I saw an opportunity to create doors to data, and do it in a way that was open-sourced. We talked about it technically as a team and knew that there might be some resistance, because the JSON report wasn’t written by people who are in the health information technology field, because the JSON scientists typically are not. And some of the language was off putting; for example, it called the electronic health records ‘Legacy systems.’
Over the course of that journey, they came to a place where they realized that, technically, culturally, and from policy standpoint, it was possible. And that led them to create essentially the Argonauts, which is the group that took FHIR and really pushed forward with the recommendations from JSON taskforce, and did it in a really cool, roll-up-your-sleeves, innovative way. That’s what led to this evolution of FHIR being a really important tool for interoperability.
It was this nice dance of private sector/public sector, private sector/public sector. It was people who initially said ‘it’s not going to happen.’ But then they turned on the smartest parts of their brain and said ‘you know what? It could happen,’ and all of that translated into this amazing passion that’s now bubbling all across the private sector and within the public sector to really change the way data is available. I love to getting to work with people like that, and I’ll hope to always get to work with them. I think that it makes for a very special field.
Gamble: Yeah. It’s really amazing hearing how some of these things went down during what was such an interesting time, and being able to pull back the curtain.
What was personally exciting for me was how intimately both secretaries that I got to work for understood it, as well as the White House, including the President, who has been pretty eloquent about data sharing needs. It’s wonderful to work in an environment where the work you’re doing is considered important, and it’s also understood — not just as a cultural and a policy, but on technical level by the leadership. And I think that gave us a lot of opportunities to make quite a lot of change.