Beyond profit: Call to close racial and ethnic heart health data gaps

Recent research has found that cardiovascular disease (CVD) impacts racialized and Indigenous communities across Europe, North America, and Central America more than their white counterparts. Plus, inconsistent racial data collection and reporting in health care systems are limiting prevention and treatment measures.

Nutrition Insight speaks to study co-author Sujane Kandasamy, assistant professor in the Department of Medicine at McMaster University, Canada, to discuss the responsibility of closing the data gap and why maintaining racial/ethnic data is essential. 

“Disaggregated data is not just a technical tool — it’s a reflection of who counts, whose experiences matter, and how systems can either perpetuate or reduce inequity,” she states.

Public versus private

Addressing the private sector’s role in bridging the ethnic and racial data gap, she notes that voluntary measures in the nutrition industry are often driven by market incentives. “While the private sector can collect demographic and racial/ethnic data on consumption patterns, product preferences, marketing reach, and diet-related outcomes, it is under no obligation to do so or share that data publicly.”

“When shared in aggregated and anonymized form, such data can support researchers and policymakers in identifying disparities, tailoring interventions, and developing culturally relevant nutrition messaging and products.” 

However, Kandasamy acknowledges that the private sector is mainly driven by consumer demand and profit, not necessarily public health goals. Therefore, it has limited ability to meaningfully close the data gap. 

“Industry tends to respond to visible shifts in population needs — such as the rise of South Asian or East Asian grocery sections in mainstream supermarkets — by adapting product offerings to suit emerging markets.”

“If the industry collects data on the ethnic composition of its consumer base, it could help reveal which products are favored by which groups. But whether this information will act as a sentinel (flagging early trends), lag behind public health efforts, or remain proprietary is uncertain,” she comments. 

Heart disease disproportionately affects racialized and Indigenous communities, but health systems often fail to track this condition.While addressing the private sector’s potential to support closing racial data gaps, Kandasamy believes it is unlikely to lead the effort without external incentives or public demand.

Collective responsibility

Some may argue that it is the government’s responsibility to resolve the blind spot in global health systems identified and published in The Lancet Regional Health - Europe. However, Kandasamy underlines that global health systems are “inherently multi-actor ecosystems.” 

The government’s role involves creating policy frameworks, funding the public health system, and enforcing equity measures. But Kandasamy argues: “The responsibility for addressing blind spots — such as the collection of racial or ethnic data in cardiovascular health — cannot rest solely on governments.” 

“These gaps reflect not only policy deficiencies but also broader systemic fragmentation involving international bodies, academia, civil society, and the non-profit and private sectors,” she says. “In many contexts, governments may lack the capacity, political will, or resources to mandate and standardize such data collection.”

“However, they can create the enabling conditions — through regulation, incentives, and standard-setting — that encourage cross-sector collaboration and support data transparency and targeted interventions.”

Kandasamy adds that responsibility is also tied to specific countries. The burden falls on governments in places with a majority of public health systems. Places with more private-sector involvement mean responsibility is more distributed.

“Moreover, neither ‘government’ nor ‘private sector’ is monolithic.” 

“For example, in Canada, public health care is managed at the provincial level, while private health systems elsewhere may involve multiple competing providers,” she adds. “What remains consistent across contexts is that recognizing and addressing systemic blind spots requires someone to shine a light on them — whether advocacy groups, scientists, clinicians, or, more rapidly, high-profile public events.” 

“Governments are ultimately accountable to voters, and private health actors must respond to consumer demand. Sustainable change happens when all sectors are mobilized toward a shared goal of equity and transparency,” states Kandasamy.

Nutrition Insight previously covered the study findings, highlighting gender as a key intersecting factor, where women from minority and ethnic groups in Western countries have the most significant cardiovascular risk burdens.

Disaggregated data reflects who matters

Kandasamy explains that without racial and ethnic data, it would be challenging to understand and tackle disparities in diet quality, food access, and health outcomes.

Shared data could support experts in identifying disparities, tailoring interventions, and developing culturally relevant nutrition messaging and products.“Without disaggregated data, these inequities remain obscured — particularly during crises like pandemics, economic downturns, or environmental shocks, when historically marginalized groups often shoulder a disproportionate burden.”  

“This kind of data enables public health messaging, nutrition programs, and medical interventions to be tailored in culturally and socioeconomically relevant ways, enhancing their effectiveness across diverse populations,” she says.

Kandasamy adds that the data can also reveal stories about dietary practices, food security, and systemic access to nutritious foods. These stories tell us about failures and where policy or resources are needed.

“Data transparency not only exposes current inequalities but also acknowledges the legacy of structural injustice — creating a foundation for targeted, equitable change.”

“While one could argue that racial and ethnic data may feel less urgent in increasingly diverse and tolerant societies, this progress is fragile,” she notes. “Recent backlash against equity, diversity, and inclusion [DEI] efforts — particularly in places like the US — puts years of advancement at risk.” 

President Donald Trump’s executive order from earlier this year, “Ending Radical And Wasteful Government DEI Programs And Preferencing,” has affected American institutions, which cuts grant funding, removes DEI-linked requirements, and encourages institutional restructuring.

Kandasamy points to the COVID-19 pandemic’s resounding reminder: “The burden of disease and death was not distributed equally. Factors like food insecurity, income instability, and reliance on highly processed, affordable foods amplified health risks in racialized communities.” 

“In moments of crisis, clear and culturally relevant communication is critical — and knowing how to reach specific communities can make the difference between widespread impact and missed opportunity,” she concludes.