This blog was co-authored by Mike Noshay, Chief Strategy and Marketing Officer, and Shawn Frazier, Senior Vice President, Sales.

Improving the nation’s healthcare system starts with overhauling its data infrastructure

As the nation emerges from the COVID-19 pandemic, now is the time to reflect on what we have learned and work together as an industry to address the deficiencies in our healthcare system. In particular, the pandemic revealed stark truths about our healthcare information technology (HIT) systems with respect to racial and ethnic health inequities and our inability to collect and share patient data electronically between providers, payers, public health organizations, and other stakeholders.

Insufficient race and ethnicity data

Race and ethnicity are known risk markers for a variety of underlying conditions that affect health. According to the Centers for Disease Control and Prevention (CDC), Black and Hispanic Americans were nearly three times more likely than White Americans to be hospitalized with COVID-19 and twice as likely to die from the virus. This segment of the population was hit particularly hard by the pandemic, in part due to the following risk factors:

• Lack of insurance
• Limited access to healthcare services
• Lower paying jobs
• Less stable employment
• Less paid sick leave
• Fewer opportunities for remote work
• Crowded living situations (i.e., multi-generational homes)
• Higher likelihood of eviction and homelessness

Some of these factors have made it very difficult for these groups to adhere to COVID-19 guidelines regarding testing and prevention.

The issue of health disparities along racial and ethnic lines is not new. Each year, Black, Hispanic, and Native Americans in the U.S. are consistently more likely than White Americans to report poor or fair health, face high rates of infant mortality, contract and die from viruses such as HIV/AIDS, and suffer and die from chronic illness such as diabetes.

The scope of the devastation caused by COVID-19 amongst Black, Hispanic, and Native Americans has brought the issue to the forefront of healthcare policymaking and appears to have strengthened the commitment and urgency of the entire healthcare industry to make bolder strides in addressing racial and ethnic disparities in healthcare.

Unfortunately, the data needed to inform our understanding of these inequities and how best to address them remains insufficient. Health payers, providers, and employers lack the complete, accurate, and standardized race and ethnicity data needed to identify and address the multidimensional contributors to disparities in healthcare.

Efforts to collect this data are often hindered by a reluctance on the part of patients to volunteer the necessary information, which is driven by distrust and a lack of understanding about how the data will be used. Limited regulations around the collection of race and ethnicity data and the inconsistent use of data standards have also impacted data integrity and transparency. According to the Department of Health and Human Services (HHS) Centers for Medicare and Medicaid Services (CMS), most commercial and Medicaid plans and more than a quarter of Medicare plans are missing race and ethnicity data for the majority of their members.

As a result, the HIT systems have, for all intents and purposes, been blind to racial and ethnic inequities. What can’t be identified, can’t be fixed. Therefore, addressing the barriers to collecting and sharing standardized race and ethnicity data is an important first step to ensuring healthcare stakeholders have the data and insights needed to start solving the structural and programmatic barriers to better care and health for all Americans.

Data-sharing barriers

The COVID-19 pandemic exposed how woefully ill-equipped our data and HIT systems are when it comes to sharing, consuming, and linking patient information. The nation’s response to the pandemic required HIT systems and public health systems to exchange real-time information about how the pandemic impacted populations and health care providers. It called for HIT systems that were more integrated, interoperable, and scalable, and data that were more standardized, accurate, and complete.

While the CDC has been working for decades to transition public health data monitoring infrastructure to more robust and integrated systems, a November 2020 report by Congressional Research Service revealed that the CDC’s work was still not complete, stating that “no federal data collection system for monitoring health utilization and supplies existed prior to the pandemic.”

Efforts to modernize public health data systems are well underway, but they have been hindered by a lack of standards that would enable data sharing between healthcare entities and public health departments. One recent study noted that more than 40% of healthcare providers indicated that public health agencies lacked the capacity to electronically receive healthcare data.

While progress toward modernizing the nation’s HIT systems has been slow, investment in HIT systems has been significant. The Electronic Health Record (EHR) market alone generates revenues exceeding $30 billion annually and comprises more than 700 vendors, each competing to provide their clients with the baseline technology needed to collect, store, and manage patient data.

And while the HITECH Act has been largely successful at accelerating EHR adoption, it has also created enormous silos of patient data that lack the infrastructure required to share data. According to the Office of the National Coordinator for Health Information Technology (ONC), more than 90% of nonfederal acute care hospitals are using certified EHR technology, but only 55% are using them to exchange patient data. Moreover, some 73% of these hospitals report having problems electronically sharing patient data across different EHR systems.

The need for high quality data

New CMS interoperability rules and the emergence of the nation’s Health Information Exchanges (HIE) promise to go a long way in helping reduce the barriers to data-sharing, but it’s important to remember that the presence of data is not enough.

For patient data to be useful, it must also be accurate, timely, structured, comprehensive, and unbiased. The challenge is that patient data can originate from a wide variety of sources. Accordingly, any strategy focused on improving our HIT infrastructure must include the use of technologies designed to curate, standardize, and electronically share patient data between healthcare stakeholders. After all, outputs from any system are only as good as the inputs.

A 2021 study published in the Journal of the American Medical Informatics Association states that “Standardizing data generally results in improved data quality and consistency, but the use of data standards does not always result in data standardization due to inconsistent implementation of current standards and the use of proprietary standards, creating a constant need for harmonization.”

Harmonization efforts can be assisted by laws like the 21st Century Cures Act, which paves the way for more standardized infrastructure and information sharing. However, the implementation of data governance standards alone is not enough. That is why HIT solutions such as Verinovum’s Data Curation as a Service^SM platform (DCaaS), which ingests, standardizes, and curates patient data to enable actionable insights, are essential to creating seamless data harmonization.

Steps in the right direction

As we invest in our nation’s HIT infrastructure, we must understand our nation’s data infrastructure needs and have a clear vision about how we are going to meet those needs. Some of the steps to ensure continued progress towards modernizing our HIT infrastructure include:

• Rigorously implementing interoperability requirements and data sharing protocols
• Advancing public health EHR interoperability requirements
• Supporting the development and adoption of social determinants of health (SDoH) data standards
• Addressing the legal and regulatory barriers to data exchange for physical and behavioral health care
• Ensuring data quality by leveraging available data curation and enrichment technology

Just as 9/11 brought together Americans from both sides of the aisle to address a common cause, the pandemic has created a similar sense of unity and resolve to do whatever is necessary to repair our outdated and inherently biased HIT infrastructure. Working together towards a common goal, healthcare stakeholders have an opportunity to build a stronger, more connected, and more equitable system of health.