Why We Need a ‘Digital Health Data Safety Net’
Erica Galvez is CEO of Manifest MedEx, California’s largest nonprofit health data network. Before joining MX, Galvez led the health information exchange efforts at Aledade and also led the Office of the National Coordinator for Health IT’s (ONC’s) Interoperability Portfolio. This article is based upon her recent keynote speech at Healthcare Innovation’s Summit meeting in Los Angeles.
This year has felt like the start of another seismic shift in healthcare infrastructure.
The Trusted Exchange Framework and Common Agreement (TEFCA) is advancing nationwide exchange and interoperability by designating an initial set of Qualified Health Information Networks (QHINs) to connect existing and emerging networks and expand health data exchange.
The Center for Medicare & Medicaid Services is set to finalize requirements for health plans to further streamline and modernize prior authorization and data sharing with providers and other plans through FHIR APIs. Many states are emerging from the pandemic with initiatives to transform both public health and Medicaid — initiatives that depend on data sharing across the healthcare ecosystem and with public health — to achieve health equity, preparedness, and whole person care goals. In our state, California is actively implementing its first statewide health data exchange framework, requiring most healthcare entities to exchange health information by 2024. With this wave of policy changes, and some actual enforcement teeth for the 21st Century Cures Act Information Blocking Rule that prohibits intentional interference with health data sharing, things might be changing…fast.
The last time we had a seismic shift in health IT of this scale started in 2009 with the ARRA economic stimulus plan setting out $27 billion in incentives to help medical organizations adopt electronic health record (EHR) technology. Included in the details of the Health Information Technology for Economic and Clinical Health (HITECH) Act were specifics around determining “Meaningful Use” of the technology to grant financial incentives.
Meaningful Use (MU) was designed to create a digital health revolution, to move us off paper records and on to computers. By many measures, the program was highly effective, introducing an extraordinary amount of change in a very short period of time. In the course of 10 years, EHR adoption in hospitals went from 9 percent to 96 percent thanks to the program, and from 48 percent to 88 percent among office-based physicians.
However, interoperability and seamless data sharing between those digital systems was deprioritized in favor of driving basic EHR adoption and use: We built the houses and businesses through the MU program, but we failed to plan and invest adequately in the roads that connect them. And while the MU program incorporated a few health information sharing and public health measures, the financial investment in interoperability infrastructure through the one-time State HIE Cooperative Agreement Program (HIE Program) of $564 million — 2 percent of the amount invested in the MU program divvied up across 50 states and a handful of territories — simply wasn’t enough to enable the robust, durable “roads” we need.
We see that so clearly now that we are trying to enable generational transformation in states like California, where our push to advance health equity by addressing the needs of the whole person through programs like CalAIM require data sharing infrastructure that connects every provider and health plan across the state — in essence a digital health data safety net that gives every provider and plan the ability to share and use the health information they need for their patients and members regardless of their size, geography, or resources.
Our collective experience of the MU program offers a number of lessons that are worth applying to current and future thinking about a digital health data safety net. Here are three to start:
1. Excluding segments of healthcare perpetuates fragmentation. Not every healthcare organization was included in MU incentives. The program excluded long-term care, public health, mental and behavioral health, ancillary service providers, and rehabilitation and psychiatric hospitals as well as independent clinical psychologists, clinical social workers, physical therapists, occupational therapists, dieticians, and diabetes nurse educators — leaving behind many providers and care teams that play critical roles for our most vulnerable populations. Policies today need to ensure that every healthcare organization, especially those serving mental health and the elderly, can participate.
2. Incentives motivate action, AND they should be used to bridge the digital divide for all providers. MU showed that rapid technology progress was possible in healthcare. The hospital and ambulatory practice incentives immediately sparked a boom in health technology adoption among qualified organizations, with even small medical practices able to invest in new systems. Safety net healthcare organizations such as federally qualified health centers (FQHCs) were actually already ahead of the sector on EHR adoption before MU, finding that the technology was “significantly associated with improved quality of care, as measured by patients’ ease in getting a timely appointment for specialty care, patients’ receipt of follow-up or preventive care reminder notifications, and [community health center’s] receipt of discharge summaries following their patients’ hospital admissions.” For these safety net clinics, the MU incentives helped them continue accelerating their innovation and gaining more influence in the healthcare landscape. With future programs, we should continue to ensure incentive programs are set up so that under-resourced healthcare organizations — particularly those left behind by MU — receive the most financial support and can make the biggest difference for health equity.
3. Public health needs to be more than a passive participant. Our public health systems have for too long been left out of programs like MU — occasionally set up to passively receive data for things like immunization registries, but not engaged as partners to design and broadly advance data sharing and infrastructure for population health and health equity. Public health must have a seat at the table of a digital health data safety net to ensure the bridges between the care delivery system and the public health system are designed, implemented, maintained, and funded adequately.
In 2015, the American Journal of Public Health published a report on missed opportunities in MU to address health equity: “The science of eliminating health disparities is complex and dependent on demographic data. The [HITECH Act] encourages the adoption of electronic health records and requires basic demographic data collection; however, current data generated are insufficient to address known health disparities in vulnerable populations, including individuals from diverse racial and ethnic backgrounds, with disabilities, and with diverse sexual identities.”
We’re at an important inflection point today to continue delivering on the value of digitized health records by helping that information get to the right care team(s), at the right time. To build a health data safety net requires coordination between state and federal leaders and ongoing funding for infrastructure that delivers value to everyone supporting individual and community health, not just those with the biggest budgets.
In this new TEFCA, post-COVID, health equity–driven universe, the status quo is our worst enemy. MU shows us that rapid progress is possible and that we can unlock change with smartly coordinated incentives and the right partners at the table. MU also shows us that when we move fast, we have to pick a focus and make trade-off decisions. Let’s make sure this next seismic shift does not lose sight of the importance of infrastructure that connects the entire health and healthcare ecosystem with equity at the center.
