Editor’s note: Below, Karen DeSalvo, MD, MPH, MSc, the National Coordinator for Health Information Technology, discusses her view of the health information technology landscape. She outlines an agenda for her office that includes incentivizing interoperability, “standardizing standards,” and establishing shared expectations and actions around data security and privacy. This post is based on Dr. DeSalvo’s presentation at the Health Information and Management Systems Society 2015 annual conference last week.
I am optimistic about the bright future we have to leverage health information technology to enable better health for everyone in this country.
One year ago, we called upon the health IT community to move beyond adoption and focus on interoperability, on unlocking the data, so it can be put to the many important uses demanded by consumers, doctors, hospitals, payers, and others who are part of the learning health system.
ONC spent the year listening to the health IT community to understand the challenges and opportunities and developing strategic roadmaps to guide our way. Our goal was to evolve to be best able to lead where appropriate, and partner wherever possible, as we all shift the national strategic focus towards interoperability. I hope you all have felt that shift.
Listening To Our Partners
While developing the new strategic focus and plans, my team and I have also worked with and listened to our federal partners and with the states.
I personally had the chance to host or participate in nearly two dozen listening sessions across the country. In those sessions I was able to hear from people on the front lines about what matters most to them. I became increasingly optimistic as I heard how committed people were to seeing that we would leverage health IT to the advancement of everyone’s health.
These listening sessions also reminded me that we would need to meet communities where they are. In Alabama, adoption is still being debated, and, like many communities in this nation, they have challenges like lack of broadband access for rural communities. In New Jersey, I heard that close proximity of major metropolitan areas from bordering states brought to light the issue of differing state privacy laws as a barrier to appropriate data flow.
In the Silicon Valley, the entrepreneurial community is moving past the notion of an electronic health record and is thinking about the next phase: person centered health records and the internet of things. In Minnesota, a history of collaboration showed me that when we let go of our own interests, communities move further when they work together instead of against each other, and we can put priorities like the public’s health at the top of the agenda.
We also had the opportunity to participate in a series of Robert Wood Johnson Foundation hosted listening sessions as part of their Data for Health initiative. Their convenings brought to the table community-based organizations and members whose voice is not as often heard in health IT policy and planning. What we heard was the importance of trust, data access, and how individuals and communities want to use data to improve overall health.
I also listened to my own experiences — as a doctor, as a daughter, and as a consumer. I thought of countless patients whom I have seen and those I continue to see when I am in clinic. Of visits where I did not have the information needed to make a decision that day, requiring patients to return and miss work, school, or other obligations. Of patients who want to engage and feel empowered but need not only data, but information, to help them level the playing field, to allow them to meaningfully engage.
Of being a caregiver for a mother dying of dementia and being frustrated at just how hard it was to get access to the information I needed to help her. And, as a public health advocate and official, needing information about my community to prioritize resources to help them address the broad determinants of health.
In the end, we have heard loudly and clearly that there is an intense pressure and impatience to continue the great progress we have made in digitizing the care experience and get to a place where every American has access to their electronic health information when and where it matters to them. ONC remains steady and unwavering in that vision.
What We’ve Accomplished
Indeed, that was the vision more than a decade ago when President Bush signed an executive order and asked David Brailer to stand up the Office of the National Coordinator for Health Information Technology. In 2009, Congress codified our role in the HITECH statute, and we carry out those responsibilities every day on behalf of the people of this country.
The flurry of work in the six years since HITECH passed brought significant advancement in the goals. The combined effort of the grant programs like the Regional Extension Centers, the ONC certification program and the Medicare and Medicaid EHR Incentive Programs – brought us to a tipping point. Today, we know adoption is strong. It is such an accomplishment from just six years ago.
This is an incredible achievement that results also from the hard work of those on the front lines. I know this is hard work because of my own first-hand experience in selecting and implementing and using electronic health records in the clinical environment — I know this is no easy task. It requires not only personal commitment but also organizational commitment, changes to workflow and culture.
Our nation’s success in adoption, and even the success we see in the increasingly widespread availability of exchange of health information, is just the beginning. To quote a member our advisory committee, the glass is indeed half full. But when you step back for perspective, it’s still a small glass. That means that we have much work to do to digitize the care experience across the entire care continuum, but also to see that we achieve true interoperability — not only exchange.
Planning For The Next Chapter
Our first step to guide all of our work in the next chapter was to lead the refresh our federal strategic direction on health IT. This was done with more than 35 partners ranging from CMS to FTC to VA/DoD and others. Why? Because the world has evolved since our last strategic plan was issued five years ago. We needed to take a moment to see that we were moving in a direction that was in synch with the marketplace and consumer expectation and to give certainty about our federal policies and approaches.
What became clear quickly was that we needed to develop a strategic approach that would leverage health IT including but beyond EHRs using levers beyond MU to bring not only better care but better health.
A key priority was to lay out a plan for how the public and private sector could work together to achieve interoperability. Systematically, with short term success but with an eye on a clear glide path to the future vision of a learning health system — one where data, shared with appropriate consent, can inform continuous improvement in health care and health in real time.
The country asked for a plan to get to interoperability and that learning health system. We delivered one. I am optimistic that we have hit the mark with the interoperability plan. From the broad feedback we received, we heard agreement that this plan is the right path forward. I am not surprised by this feedback because as we did this work over the last year we listened and sought practical solutions that would work in the real world.
Getting To Interoperability
To get to interoperability as quickly and safely as possible we need to build upon the current infrastructure and to pursue three critical pathways:
- First, we need to standardize standards, including APIs, and implementation standards.
- Second, we need to have clarity about the trust environment — what are the shared expectations and actions around data security and privacy?
- And third, we need to incentivize—in a durable and sustainable way—interoperability and the appropriate uses of electronic health information — all with the goal to advance health care and health.
And now we must act on our roadmap, our plan. For the ONC’s part, we put out our first deliverable which was our Interoperability Standards Advisory. Clear expectations about what standards we should all use.
We also released a report on information blocking last week that gives a clear definition of blocking and recommends actions in hand, gaps in authorities where we look forward to working with Congress on solutions.
We are committed to leveraging not only Meaningful Use, but also CMS payment rules, the Department of Defense in their acquisition of health IT and other federal program incentives to incentivize the use of those standards and that trust environment.
We intend to use all of the most impactful and appropriate tools in our toolbox and have called on the private sector and states to do the same. Congress is our partner; I am excited to see their interest in making sure that health data is available for consumers, and our doctors, when and where it matters most.
I am optimistic because I am seeing collaboration like never before from the private sector — look at the Argonauts—the coalition of technologists and developers who are collaborating in an unprecedented fashion—who are accelerating the maturation of FHIR, to see that we have a safe, but highly usable new technology that stands to transform the health IT ecosystem.
The Ultimate Goals: Better Care And Better Health
Interoperability is a priority but is really only a means to an end. What we are moving towards is a world in which health IT and interoperability enables better care and better health. This is a community goal, and this is clearly our goal at HHS. Secretary Burwell has embraced the importance of health IT and interoperability as central to delivery system reform and one of her top priorities.
HHS and the Administration have laid out a framework to get to better care, smarter spending and healthier people—this delivery system reform initiative that I have the honor to co-lead on her behalf—is leveraging the three pillars of changing the way we pay for care, deliver care, and make information available to inform care and health.
We know for a fact that unless we have the health information technology, including interoperability right, we will not bring payment reform or better care models like the medical home to scale.
As we act on this vision, we have an ongoing cadence of work ahead. We will need an unprecedented amount of cooperation, collaboration, and transparency to see that there is the best public private partnership possible. We will build upon our strong foundation, using the tools and technologies in hand, systematically but with urgency. I am optimistic that together, we can reach our vision — that we are within reach of every American having access to their electronic health information when and where it matters most to them.