Why inclusive research is vital for South Asian heart health
Cardiovascular disease casts a long shadow across the globe, and here in the United States, it remains the leading cause of death. The stark reality, highlighted by data from the Centers for Disease Control and Prevention’s 2022 Death and Mortality Report, revealing 702,880 lives lost to heart-related illnesses, underscores the urgency of understanding and combating this pervasive threat. While it affects individuals across all racial and ethnic lines, the burden is not evenly distributed. CDC statistics from 2021, for instance, indicate a higher proportion of heart disease-related deaths within Asian communities (18.6%) and Asian Pacific Islanders (18.3%) compared to the national average (17.4%).
Within this broader picture, a critical gap in our understanding persists: the cardiovascular health of working-class South Asians. Despite anecdotal evidence and emerging studies suggesting a heightened risk within this community, comprehensive research remains scarce. This lack of data leaves a void, hindering our ability to pinpoint the specific factors driving these potential disparities and develop effective interventions.
The South Asian Workers Center (SAWC-Boston) has witnessed firsthand the healthcare needs of South Asian communities in our region, particularly in the wake of the COVID-19 pandemic. Recognizing the urgency, we have actively partnered with the “Our Health” study, a collaborative effort led by cardiologists and genetic researchers from Mass General Brigham and the Broad Institute of MIT and Harvard. This vital research endeavors to delve into the intricacies of cardiovascular disease risk within South Asian populations, seeking to unravel whether genetic predispositions or cultural and environmental factors play a more dominant role.
One of the fundamental flaws plaguing existing cardiovascular disease research is the glaring lack of diversity in study populations. South Asians, despite comprising a significant 23% of the global population and facing twice the risk of cardiovascular disease compared to Europeans, as noted in a 2021 cohort study by Patel and colleagues, are markedly underrepresented in genetic studies.
Furthermore, the discourse surrounding South Asians in research often defaults to the experiences of Indian individuals, rendering other vital subgroups within the South Asian diaspora—including Bangladeshis, Nepalis, Pakistanis, and Sri Lankans—largely invisible. Class is often also overlooked in studies of South Asians, despite the fact that South Asians are an economically diverse group with distinct experiences of the health system.
SAWC-Boston’s active participation in the “Our Health” study is a direct response to this invisibility. By ensuring the inclusion of individuals from diverse South Asian backgrounds, we aim to contribute to a more comprehensive and representative dataset. This diversity is not merely a matter of principle; it is a scientific imperative. Historically, the overreliance on homogenous study populations has meant that medical research, diagnostic tools, and treatment protocols often fail to account for the unique health challenges faced by underrepresented groups. Increasing diversity in cardiovascular health studies allows us to identify specific risk factors within South Asian communities, paving the way for more accurate diagnoses and tailored prevention strategies.
The importance of diversity extends beyond ethnicity. Socioeconomic factors and accessibility barriers have historically excluded working-class South Asians from participating in crucial health studies. By actively working to ensure their representation, we can generate findings that are truly relevant and applicable to the entire community. Without this inclusive approach, interventions designed to prevent or manage cardiovascular disease risk running the risk of being ineffective or inaccessible to those facing economic and logistical hurdles to healthcare.
Recruiting participants from working-class South Asian communities presents unique challenges. Issues such as limited digital literacy, demanding work and family responsibilities, and a resulting potential lack of time or willingness to engage in health studies can create significant barriers. Furthermore, deeply ingrained national identity affiliations or distrust within the community can lead to reluctance in supporting studies perceived as being led by specific national groups. Fears of medical institutions without culturally competent, multilingual personnel, or a general distrust of Western medical institutions may also alienate working-class South Asians from medical resources. Undocumented South Asians may feel particularly vulnerable. Finally, tragically, the daily struggles faced by working-class individuals can sometimes lead to an undervaluing of long-term health in favor of immediate needs.
Moreover, the very design and interpretation of research can be hampered by unconscious biases and stereotypes. There is a growing recognition of the need to improve the cardiovascular health of immigrant communities, necessitating research that embraces extensive and diverse population samples. SAWC-Boston’s involvement in the “Our Health” study is not just meaningful; it is a crucial step towards addressing these limitations.
Deeper cultural nuances also influence the willingness of immigrants to participate in health studies. A prevalent belief within immigrant communities is that the healthcare system can be neglectful and dehumanizing, prioritizing profit over patient-centered care. This shift towards standardization can lead to individuals feeling like mere “data banks” or “guinea pigs,” raising concerns about the misuse of personal data for corporate gain.
At SAWC-Boston, we champion the importance of cultural specificity in healthcare over a one-size-fits-all approach. We recognize the inherent strengths within South Asian cultures that can promote health, such as traditional healthy foods, alternative medical practices, stress-reducing exercises like meditation and yoga, and strong family support systems. However, we also acknowledge the influence of patriarchal traditions that can inadvertently create barriers to healthcare engagement for women. The societal expectation for women to manage work, family, and household responsibilities—the “second shift,” a term coined by Arlie Hochschild—can lead to shame and reluctance in seeking help or participating in studies, despite the unrealistic nature of these demands.
Our biases and stereotypes can inadvertently exclude individuals from participating in vital research. To counter this, SAWC-Boston has actively facilitated healthcare workshops, fostering open conversations about health concerns, particularly in the aftermath of the COVID-19 pandemic. These discussions have focused on both physical and mental well-being, crucial elements in disease prevention and overall health.
Ultimately, our participation in the “Our Health” study aims to expand our understanding and gather invaluable data on the cardiovascular health of the South Asian community, a historically underrepresented group. This research is essential for developing targeted education and support systems to promote heart health within our community. Furthermore, seeing ourselves represented in medical research fosters a sense of empowerment and recognition within the healthcare system, helping to reduce harmful biases and stereotypes. By investigating the genetic factors contributing to the higher prevalence of heart attacks among South Asians, researchers can shed light on critical underlying mechanisms.
Cardiovascular disease rates are shaped by a complex interplay of factors, including genetics, lifestyle, socioeconomic status, access to healthcare, and cultural influences. To truly improve health outcomes, it is imperative that we consider all these variables and respect the unique healthcare needs of individuals and communities.
To this end, SAWC-Boston is actively engaged in initiatives designed to prevent cardiovascular disease within our community. These efforts include our participation in vital healthcare studies like “Our Health” (more information available at ourhealthstudy.org), providing culturally relevant healthcare education focused on lifestyle modifications, and empowering community members with the knowledge and resources to navigate the healthcare system effectively. By bridging the gap in research and fostering inclusive engagement, we can pave the way for a healthier future for all South Asians.
This article was produced with the help of Sara Giusti (research assistant) and peer reviewed by Gowri Vijayakumar (advisor, SAWC). Special thanks to Dr. Soumya Ganapathy (physician, Lahey Health & advisor, SAWC) and Dr. Romit Bhattacharya (“OurHealth” study, Mass General Bringham) for their valuable comments. Additional thanks to Thanmaya Lakshmi Akarapu for providing research assistance.
