Lessons Learned from the COVID-19 Pandemic: How Data Sharing is Improving Chronic Disease Outcomes

by Brett Furst, President, HHS Technology Group — Nov 2, 2022

Although the worst of the COVID-19 pandemic is likely behind us, many Americans living with chronic disease will feel its effects for years to come. That’s because chronic diseases such as heart disease, diabetes, chronic kidney disease, and obesity increase the risk for severe and lasting illness from COVID-19.

According to the Centers for Disease Control and Prevention, this improved risk matters, because chronic diseases represent seven of the top 10 causes of death in the United States and six in 10 Americans live with at least one chronic condition, such as heart disease, stroke, cancer, kidney disease, or diabetes. Chronic diseases also are the leading drivers of the nation’s $3.8 trillion annual healthcare costs.

Among many lessons learned since its start, COVID-19 highlighted the need for health equity, as some patient populations were affected more severely than others. For example, African Americans, Hispanics, and Native Americans have a disproportionate burden of chronic disease, COVID-19 infection, hospitalization, and mortality, primarily due to challenges associated with social determinants of health. Even among the general population, healthcare utilization dropped during the pandemic, with a decline in screenings and subsequent diagnoses for diseases such as cancer. Delayed screening and treatment for breast and colorectal cancers alone could result in almost 10,000 preventable deaths in the US, according to the CDC.

The lasting impact that COVID-19 has on individuals living with chronic disease, and the entire healthcare system, underscores the many lessons we can learn from the pandemic and the need for improved data sharing across all stakeholders. For example, researchers have yet to know the extent to which COVID-19 exacerbates chronic disease, causes chronic illness, or will be determined to be a chronic disease. Although long-term studies and longitudinal surveillance will help clarify these questions, much research remains.

The COVID-19 Research Database (RDB) is a leading industry example of how collaboration and improved access to patient ecosystems can accelerate innovation and understanding, improving immediate and future cost and quality outcomes. Several organizations were led by RDB to accelerate real-world pandemic research, knowledge of condition identification and treatment, and evidence-based healthcare policy.

With 85 billion HIPAA-compliant, patient-level records, RDB enables public health and policy researchers to access real-world data to understand better and combat the COVID-19 pandemic and future health-related events. The RDB provides a standard data schema that allows researchers to access linkable data sets — including claims, electronic health records, and consumer data — and has powered over 70 publications and presentations addressing the direct and indirect effects of the COVID-19 pandemic on population health.

Among the publications and studies resulting from the RDB is the publication of research in Nature Medicine examining the impact of COVID-19 infection on risk for neurological disorders and a separate study published in the Journal of Alzheimer’s Disease that showed a substantially higher risk for older adults in developing Alzheimer’s disease within a year of contracting COVID-19.

Accurate, comprehensive, real-world data represents the healthcare industry’s straightest path toward developing a deeper understanding of the connection between COVID-19, chronic disease, and population health. Data sharing and collaboration provide researchers, providers, and healthcare organizations with the keys to actionable insights, data-driven decision-making, and accelerated innovation related to critical issues like improving health equity and driving healthcare cost and quality outcomes across populations.