Highlighting the Need for More Data to Achieve Global Health Equity

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Since the start of the COVID-19 pandemic, global health equity has been placed more prominently on the academic and policy agenda. A study published by JAMA Network Open suggests that two premises underlie the global discussion about health equity.¹

“First, persistent and in some cases widening global health gaps should no longer be tolerated, and it is worth the global work to narrow these health gaps. The life expectancy gap between high-income and low-income countries, which can be as great as a 30-year difference, is unacceptable,” the authors of the study wrote. “Second, closing global health gaps is an enormous task, one for which there are no easy quick wins and one that will only be achieved over time with concerted efforts on multiple fronts. This point stands on the observation that global health gaps are largely driven by the social determinants of health (SDOH)—the conditions in which people live, grow, learn, work, play, and age—and the role that they play in shaping the health of individuals and populations.”

Efforts to close the health equity gap start with producing higher quality data, according to the authors. The past decade has seen advancements in digital technologies, big data, artificial intelligence, and machine learning, providing the means to measure health inequities and identify effective approaches. Despite this, there has been a slow adoption of evidence-informed initiatives.¹

According to a 2021 article by KFF, people of color have felt the biggest impact from the COVID pandemic—from higher rates of infection, illness, and death, to negative mental health, social, and economic impacts. Although crediting the disparate impact of the pandemic for increasing recognition for the need to address longstanding racial disparities in health and healthcare, there still are a lack of sufficient data to understand disparities in COVID-19 impacts and uptake of the vaccines.²

“Data are a cornerstone for efforts to address disparities and advance health equity,” author Samantha Artiga wrote in the KFF article.² “Data are essential for identifying where disparities exist, directing efforts and resources to address disparities as they are identified, measuring progress toward achieving greater equity, and establishing accountability for achieving progress. Without adequate data, inequities remain unseen and unaddressed.”

Current work that aspires to position data at the center of global health equity discussions emphasizes the importance of addressing health inequities caused by SDOH to improve the overall health of various populations. This will require key stakeholders to understand how data can be used to emphasize the role SDOH play in shaping health, that critical questions on data collection and use are addressed, and that decision-makers both understand the role of SDOH and are held accountable through data and measurement for the health and well-being of the populations they serve.¹

Achieving this goal won’t come without significant challenges. For example, the availability, accessibility, and accuracy of big data differ substantially among countries. The authors of the JAMA study cited three other major challenges that limit the extent to which data can contribute to narrowing health gaps: creating the political will, improving technical capacity, and community engagement.¹

“First, activating political will requires developing a common language with a broad range of decision-makers, for example, highlighting the potential return on investment from better health and narrowing health gaps for all sectors,” the authors explain. “Second, technical capacity is needed to translate a new appreciation for big data and SDOH into actionable directives that can improve policy decisions and population health outcomes. Developing systems that collect relevant data and then extract insights from the vast and complex available data require expertise and experience. Third, engaging communities in gathering and owning data are critical to ensure data transparency and trust in the data.”

The federal government has recently passed a law aimed at providing more diversity in clinical trials. First enacted in December in 2022, Public Law 117-328 requires diversity action plans for the clinical trials used by the FDA in order to decide whether drugs are safe and effective. The purpose of the bill is to close knowledge gaps, as drugs have been tested on primarily white men for decades, despite black Americans accounting for 13% of the population and 22% of yearly cancer cases.³

The FDA has also recommended focusing on race and ethnicity, with Congress calling for demographic information such as age, sex, geographic location, and socioeconomic status.³

The vision for a world with fewer health gaps requires a comprehensive perspective on data use, accountability, and data-informed decision-making. It also calls for advancements in data systems, ethical guidelines, and public communication to create demand for action on SDOH. Importantly, achieving this vision depends on embracing health equity as a global value and honoring communities' lived experiences and perspectives.¹

References

1. Data to Improve Global Health Equity—Key Challenges. JAMA Network. November 2, 2023. Accessed November 15, 2023. https://jamanetwork.com/journals/jama-health-forum/fullarticle/2811622
2. Advancing Health Equity Requires More and Better Data. KFF. October 27, 2021. Accessed November 15, 2023. https://www.kff.org/policy-watch/advancing-health-equity-requires-more-better-data/
3. Diversity in Clinical Trials at FDA Gets a Boost From New Law. Bloomberg Law. January 19, 2023. Accessed November 15, 2023. https://news.bloomberglaw.com/pharma-and-life-sciences/diversity-in-clinical-trials-at-fda-gets-a-boost-from-new-law