To find success stories about how health information exchanges (HIEs) function as health data utilities across the United States, look no further than recent efforts to support local, state, regional, and national responses to the COVID-19 pandemic.
There are numerous instances where our member organizations have demonstrated the vast capabilities of health data utility infrastructure to solve some of the most pressing challenges associated with making real-time and actionable clinical data available to those who need it most. This includes areas of focus, such as:
- Bridging divides between public health departments and health care providers;
- Admissions, discharge, and transfer data;
- Lab results;
- Radiology images; and
- Longitudinal health information
CSRI prioritized this work to support the country’s critical needs as we navigate through a pandemic that has taken the lives of more than 976,000 Americans.
Despite these demonstrated strengths, the health data utility model faces two key challenges, which include:
- Funding isn’t treated like critical infrastructure. Instead, it’s programmatic in nature, which means that HIEs lack ongoing, clear, and sustainable funding through public health and Medicaid infrastructure.
- Clear expectations and policy guidance. Both are needed to clarify the roles and opportunities for HIEs in our roles as health data utilities when we provide clinical information with public health departments and health care providers.
How the health data utility model works
The health data utility is a locally governed, public-private resource providing a source of truth for robust clinical and non-clinical data. The benefit to state and other health care system stakeholders: The health data utility can be used to build healthier communities.
Some of our efforts to build this model include creating collaborative funding opportunities between public health and state-based health data utilities, providing more definitive language about specific data-sharing use cases, and including interoperability between public health and health care providers as a core tenet of public health modernization efforts.
Specifically, here in Colorado, Health First Colorado (our state’s Medicaid program), discovered stark disparities on ethnic and racial lines with vaccine rates. With access to data provided by Contexture, where I serve as executive vice president, Colorado identified trends within communities and directly addressed health inequities by sharing information about assistance programs among appropriate groups, which is improving outcomes in the short and long run.
Also here in Colorado, the nonprofit Health Care Partners Foundation and other health care partners serving county jails are using data from Contexture to make informed decisions that can improve health outcomes for incarcerated people who are returning to their lives. Similar efforts are occurring around the country, where detention centers have access to health information as part of a medication consistency pilot program.
Three lessons learned about the health data utility model
Within CSRI, there are numerous examples of the ways that HIEs are clarifying and building our roles as health data utilities in our respective health care ecosystems. By leveraging our collective experience, we’re seeing growing traction about how to bridge the divide between public health and the broader health care system.
The organizations that form CSRI have learned some lessons along the way. These include:
- Successful health data utilities are tapping into and acting upon the policy and political priorities in our states–just as we’re doing here in Colorado with increasing health equity and improving health outcomes for incarcerated persons as they return to their lives.
- Still, there’s no one right policy lever. The right approach is to find the policy levers and priorities that are going to work in your state, which includes political and economic concerns.
- Advocating for models that build on historic investments that advance collaboration across multiple stakeholder groups by utilizing a locally governed, nonprofit structure with extensible benefits to communities and constituents.
What’s next for health data utilities?
Despite HIEs’ successes as health data utilities in various states across the country, there’s a lot of work left to do in order to demonstrate our national role and need for long-term financial support.
For one, the funding models need to change. Specifically, to deliver on the promise of our work as health data utilities, I advocate that we should receive ongoing, clear, and sustainable funding through the public health infrastructure and Medicaid programs that already exist. One idea is to create joint public health-health data utility funding opportunities that encourage these partnerships.
In addition, the role of government is incredibly important as we advocate for the health data utility model. Local, state, and federal government entities play an important role in ensuring alignment around public health data governance and expectations about how that data can be shared.
More specifically, the federal government has a pivotal role to play in driving interoperability standards for public health and health care IT systems to ensure that we aren’t simply rebuilding the current system with new investments. In conclusion, in our work as health data utilities, we have a powerful impact on the communities we serve. Essential to our success is support from all levels of government, including long-term resources to support these relationships and activities.
Morgan Honea is president of the CSRI board of directors. CSRI is a collection of the nation’s largest and most robust nonprofit health data networks that connect over 80 million records for patients across several states and provide a wide range of services to health care organizations. He’s also executive vice president at Contexture, an HIE serving Colorado and Arizona.