The $87M push that could make or break our public health data system

Since its inception in 2004, the Office of the National Coordinator for Health Information Technology (ONC) has delivered outsized results for its size. This subdivision of the U.S. Department of Health and Human Services (HHS) has a budget of around $60 million and a team of approximately 150 people — small by federal standards — to accomplish the large task of “Improv(ing) the health and well-being of individuals and communities through the use of technology and health information that is accessible when and where it matters most.”

Each generation of ONC leaders has smartly focused the agency on a few pressing priorities. In its first phase, ONC laid the blueprint for nationwide information sharing. Then ONC guided the rapid adoption of electronic health records by nearly all hospitals and most physicians across the U.S. More recently, ONC has championed breaking up information silos through new application programming interface (API) standards, patient data access, and information blocking regulations.

Now with public health data modernization taking on new urgency, the pressing need to improve health equity and the ongoing challenges of healthcare cost and quality, President Biden has proposed a 40 percent increase in funding for ONC. If approved by Congress, ONC will receive $87 million for fiscal year 2022. With more funding, prominence, and demands, where should ONC place its focus?

First, focus your efforts

A small agency does not have the luxury of being everything for everyone, and constraints and focus will spur faster progress and innovation. We are excited to see ONC prioritize public health data modernization, health equity, and accelerating progress toward value-based care:

  • As Micky Tripathi said this spring at a Health Information Technology Advisory meeting, “Covid is the top priority of the administration, ONC included, full stop.” In that area, we applaud ONC’s collaboration with CDC to build a modern public health data infrastructure, that breaks the silos separating clinical care and public health, and will speed our recovery from this pandemic and support better preparation, faster response, and greater resilience for the next. The relief packages will provide funding for states, but so much more is needed. ONC’s budget proposal recognizes this priority with an increase of $13 million to “build the future healthcare data infrastructure needed to better respond to and prepare for public health emergencies, including the Covid-19 pandemic.”
  • Improve health equity by working with private and public leaders to create standards, policies, and systems to ensure that race and ethnicity, demographic, housing, and social-services data are consistently shared among health providers, health plans, and social service agencies. With this information, clinical and public health leaders can rapidly identify emerging disparities, offer services that better meet patients’ needs, improve outreach, and develop systemic solutions to increase equity.

ONC has done important standards development work though the Gravity Project. But we also need pragmatic near-term solutions to increase the completeness and accuracy of race and ethnicity information in data exchanged today. This would be an ideal topic for an ONC data challenge. Or ONC could work collaboratively with CMS on Medicaid incentives, such as this program in Arizona, that provides up to a 3 percent payment bump to providers sharing data and improving its quality. Finally ONC could fund and pilot using the combined data of health information networks to fill data gaps. One state was recently able to fill 42 percent of the Covid data gaps in race, ethnicity, and contact information through such a partnership.

  • Help the Centers for Medicare and Medicaid Services (CMS) accelerate the transition to value-based care by addressing the data challenges holding back progress. Last year CMS made a bold move by requiring all hospitals to share admit, discharge, transfer (ADT) notifications with community providers as a condition of participation in Medicare and Medicaid. These ADT notifications are a critical tool used by accountable care organizations (ACOs) to improve care transitions and reduce readmissions. What should come next? Standardized claims data sharing with providers? Broader reliance on data aggregators to reduce the burden of quality reporting?

These outcomes are aligned with ONC goals and January’s Vital Directions issue of Health Affairs as three of the most critical priorities for our healthcare system in 2021.

Second, understand your power

ONC’s direct policy levers will not have as much weight in the next few years as they have had previously. Yes, ONC regulates electronic health record (EHR) certification — but the technology ecosystem we need now is far broader than just EHRs. Yes, ONC sets the policies for information blocking — but in coming years, the key factors will be whether the HHS Office of the Inspector General meaningfully enforces the policies already set and whether CMS establishes penalties for providers.

The power of ONC lies in its coordination — meaning its partnership and collaboration with sister agencies to achieve shared outcomes and its ability to engage and guide change in the broader technology ecosystem. In the past, when ONC has attempted to take bold steps without strong alignment with peer agencies that hold the bigger policy levers and budgets, progress has been slow.

The White House can support and reinforce this critical coordination work. During the HITECH Era, ONC co-led a White House task force on health information technology. The task force brought together the Veterans Administration, the Department of Defense, the Commerce Department, and multiple HHS agencies to set an ambitious strategy for aligned progress in electronic health record adoption using all the powers of government. The same structure is needed now to design and build a modern public health data infrastructure for states and the nation.

Third, build blueprints, not just standards

We have seen that strong partnerships between state public health departments and robust state-based “health data utilities” such as Maryland’s CRISP, Indiana’s IHIE or Nebraska’s CyncHealth are a key component of a modern public health data infrastructure. Health data utilities aggregate clinical and claims data, match records, and clean and normalize information, helping their states track public health trends and identify and address gaps. Health data utilities will be indispensable partners to states seeking to:

  • Identify high-risk patients and populations that have not been vaccinated
  • Track breakout infections post vaccination
  • Plan for booster campaigns
  • Examine health system “catch up” on prevention and other needed services
  • Analyze vaccination equity efforts

Working hand in hand with a small number of states, existing data utilities, and federal partners, ONC can define the blueprints for these collaborations that can be adopted across the nation. This work will be more hands-on and cross-cutting than ONC’s recent standards development initiatives, requiring technical, governance, funding, and policy strategies. The results will be pragmatic and reusable road maps, governance models, technical guidance, open source modules, funding options, and supportive policies to scale this model to other states.

Tying it all together

Under the leadership of Micky Tripathi and with its expert team, ONC has an incredible opportunity to “improve the health and well-being of individuals and communities through the use of technology and health information.” To do so, it must be surgical in its priorities, effectively leverage its partnerships with agencies that have scale and resources, and collaboratively build the blueprints needed for public health data modernization.

Photo: eichinger julien, Getty Images