Invest in the data systems we need to create the healthcare we deserve

Invest in the data systems we need to create the healthcare we deserve

According to data from the Centers for Disease Control and Prevention (CDC), Black and Hispanic Americans of similar age were nearly three times more likely than White Americans to be hospitalized with COVID-19 and twice as likely to die from the virus. The CDC acknowledges that “race and ethnicity are risk markers for other underlying conditions that affect health,” with many racial and ethnic groups more likely than White Americans to: be uninsured; have more limited access to health care services; work in lower-paying, less-stable jobs that are less likely to offer paid sick leave and more likely to be in occupations in which social distancing and working from home are not options; live in more crowded, multigenerational homes that make it more difficult to follow prevention guidelines; and be more likely to face eviction and homelessness in times of economic instability. But the pandemic has only provided us a hastened view of what otherwise quietly unfolds every other year in the US. Black and Hispanic Americans and American Indians/Alaskan Natives are consistently more likely than White Americans to report poor or fair health, face high rates of infant mortality, contract and die from preventable viruses such as HIV/AIDS, and have and die from chronic health conditions such as diabetes. And, too often, the data we have to inform our understanding of these health inequities are limited to outcomes of our system’s failures.

Health payers, plans, and providers lack the complete, accurate, and standardized race and ethnicity (R/E) data needed to identify and address the multidimensional contributors to disparities. Efforts to collect data are frequently stymied by member reluctance to volunteer information, driven by system distrust and a lack of understanding of how such data will and will not be used; limited and uneven regulations that govern and incentivize R/E data collection across lines of business; and inconsistent use of R/E data standards among service partners, impacting collective data integrity and use. Even as late as 2015, most commercial and Medicaid plans, and more than a quarter of Medicare plans, had race data missing for a majority of their members; ethnicity data was even more incomplete. In a November report, the Congressional Research Service shared that “while Congress has long recognized the need…to monitor health care utilization and supplies [during a public health emergency], no federal data collection system for relevant information existed for the pandemic.” Furthermore, while the CDC had been working for decades to transition public data surveillance infrastructure to “more robust integrated electronic systems,” that process was not yet complete when the COVID-19 pandemic started. “Efforts to modernize public health data systems, while underway, are hindered by…a lack of standards that enable data sharing between health care entities and public health departments.” One study noted that more than 40 percent of hospitals reported that public health agencies lacked the capacity to electronically receive data. But while underinvestment in our nation’s public health infrastructure is not a new story, the same cannot be said for underinvestment in the information technology supporting our nation’s health care industry.

Our national COVID-19 response required our complex public health and health information technology (HIT) systems to exchange real-time information about how the pandemic was impacting our population and our health care providers. It required HIT systems that were more integrated, interoperable, connected, and scalable, and data that were more standardized, accurate, and complete than they were. Health care’s HIT footprint is massive, complex, and fragmented. The electronic health record (EHR) market alone generates revenues exceeding $30 billion annually and comprises more than 700 vendors, each competing to provide clients with essential, baseline technology for collecting, storing, and managing patient data. And while the nation’s $30 billion Health Information Technology for Economic and Clinical Health (HITECH) Act-push to digitize our health records has largely been successful in terms of accelerating EHR adoption, it created modern castles of patient information without the roads—the infrastructure—to bind them, or the strong data-sharing and interoperability requirements needed to counter the development of a culture in which patient health information became a valuable, strategic, and private good for health systems and EHR vendors. New data from the Office of the National Coordinator for Health Information Technology (ONC) confirm that while more than 90 percent of nonfederal acute care hospitals nationally use certified EHR technology, only 55 percent used these systems to exchange patient data and 73 percent had challenges in electronically exchanging patient health information across different EHR systems.

Our Data And Health Information Technology Systems Are Ill-Equipped To Share, Consume, And Link Patient Information We cannot fix what we cannot see, and our health care data has been blind to our racial and ethnic health inequities for too long. Addressing barriers to the acquisition of standardized race and ethnicity health care data is critical for ensuring all health care stakeholders have the information they need to contribute to resolving the deeply entrenched structural and programmatic barriers to better care and health for all Americans.

We need HIT that supports the collective work of advancing a healthier nation and promotes data liquidity for HIEs, allowing protected patient information to safely, securely, and seamlessly travel between care providers; HIT that is scalable and versatile enough to support broader public health use cases and support our ability to address drivers of our health (which contribute to as much as 80 percent of our health outcomes); HIT that redirects market competition from data ownership to effective data use.   While the recent interoperability rules from the Centers for Medicare and Medicaid Services (CMS) and the ONC promise to reduce data-sharing barriers, and America’s health information exchanges (HIE) remain well-positioned to bridge many of these chasms (as the Kansas Health Information Network [KONZA], Maryland’s Chesapeake Regional Information System for Patients [CRISP], and the Statewide Health Information Network for New York [SHIN-NY] all demonstrated through the pandemic), much work remains, and the costs of our past decisions continue to accumulate. The protectionism embedded in the design of our nation’s HIT infrastructure slowed the sharing of clinical information among health care and public health organizations—from patient treatment responses to laboratory and testing result reporting—and required the development of often-manual reporting workarounds.

During a year containing an unprecedented national shutdown, when more than half of adults reported they or their family members skipped medical or dental care between March and May 2020, and when the US gross domestic product fell by 3.5 percent, health services revenue still only fell by 1 percent. According to the Peterson-KFF Health System Tracker, despite an 8.9 percent drop in year-over-year health services spending during the second quarter of 2020, health services revenue rebounded by the fourth quarter (+3.4 percent year over year), leaving the sector a bigger share of our national economy than where it started—with a backlog of delayed care and vaccination spending still to be rendered. Before the pandemic, CMS, in its National Health Expenditure Projections, estimated that national health spending would grow at 5.5 percent annually through 2027, when it would reach nearly $6.0 trillion and comprise nearly 20 percent of our economy. CMS estimated growth would be driven by demographics, as individuals age into Medicare and require higher-intensity services with higher service prices. This growth is unparalleled internationally, and unsustainable locally. Health Care Costs Continue To Rise—And We Do Not Have The Comprehensive Market Data We Need To Stem The Tide

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