South Asian Health: From Research to Practice and Policy - An Overview

Background

The number of South Asians (SA) in the U.S. has grown tremendously in the past decades, and now stands at over 2.5 million [1]. This population, which hails largely from India, Pakistan, Bangladesh, and Nepal, has staggering cardiovascular disease (CVD) and cancer risk [2–5]. This diverse population often faces tremendous cultural, socioeconomic, linguistic and structural obstacles to achieving good health [6–10]. Coupled with this is a paucity of detailed data on the population’s unique CVD and cancer risk profiles, etiologic mechanisms, and effective interventions to address the health disparities affecting first- and second-generation South Asians in the U.S. This data gap compelled a bringing together of those who are working in these areas to develop more targeted research and evidence-based approaches to practice and policy. Two leaders in the field, the South Asian Health Initiative (SAHI), a community based participatory research program in New York, codirected by the Immigrant Health and Cancer Disparities (IHCD) Service at Memorial Sloan Kettering Cancer Center (MSKCC) and the South Asian Council for Social Services (SACSS), and the Palo Alto Medical Foundation Research Institute (PAMFRI) in California, thus partnered to effect the first national South Asian translational research endeavor, South Asian Health: From Research to Practice and Policy, funded by the National Institute for Minority Health and Health Disparities, through an R13 grant mechanism (1R13 HD007147-01A1). This ongoing effort has engaged multidisciplinary researchers, community members, policy makers, and practitioners to develop a translational research blueprint for South Asian health disparities research and practice in the U.S.

Methodology

South Asian Health:

From Research to Practice and Policy was established in Winter 2013 to address CVD and cancer disparities among South Asian immigrant communities in the U.S. This three-part initiative was structured to foster sustained community–academic collaboration through virtual working group meetings, an in-person convening, and several community-academic forums throughout the U.S. First, a series of virtual working group meetings were held based on six key themes. Each group reviewed the literature related to its theme and produced a preliminary report and research priority recommendations. Second, a day-long in-person convening of all of the working group members and invited participants and observers was held to expand on the working group findings and further refine future research priorities. Third, five community-academic forums were held to further engage the SA community in defining research priorities.

Virtual working group meetings

Six working group themes were examined in the context of CVD and cancer prior to the in-person convening. Each working group was dedicated to a health area relevant to the South Asian immigrant community in the U.S.:

• Genetics, Epigenetics, Epidemiology, and Pathophysiology

• Lifestyle and Behaviors

• Inflammation, Infection, Exposure, and the Human Microbiome

• Alternative Tobacco Products

• Mental Health and Stress

• Healthcare Access and Patient-Provider Readiness

Through ongoing virtual meetings, each working group reviewed and catalogued the available evidence pertaining to its theme, and identified pressing gaps in the available data on CVD and cancer risk in South Asian communities in the U.S. Concurrently, South Asian Health partners engaged community representatives to solicit their input on research priorities at the community level. Each group then produced a preliminary actionable report and research priority recommendations pertaining to their theme.

In-person convening

A one-day invitational conference to synthesize and expand upon the preliminary working group findings was held on September 20, 2013 at Memorial Sloan Kettering Center in New York City. The convening included approximately 50 invited experts from across the U.S., Canada, and South Asia, and a group of observers, who participated in working group sessions divided by the six themes listed above. This transdisciplinary group of researchers, community members, and practitioners in medicine, nursing, health policy, health outcomes, health services research, basic and social sciences, and public health partnered in a multi-faceted South Asian health disparities research review to identify gaps and synergies, and to develop future research priorities. The conference was truly translational in nature, bridging outreach and education, research, practice, and policy. Conference planning efforts were led by a robust Steering Committee consisting of national and international experts in South Asian health disparities research and practice, and community leaders.

Community-academic forums

Five post-conference community town hall meetings, held in New York, San Francisco, and Chicago, extended the conference’s interactions with the community. The meetings utilized a modified Delphi process to further engage the SA community in identifying research and service priorities, facilitate the development of the research blueprint, and disseminate conference findings.

Taken together, the virtual working group sessions, in-person convening, and the community-academic town hall meetings were the foundation for a yearlong collaborative effort to chart a relevant and actionable translational research blueprint to reduce South Asian health disparities in the U.S., which we present in this special supplement.

Summary of Findings

Several findings emerged that cross-cut all of the working group themes. Importantly, data that are nationally representative and disaggregated according to SA subgroups are lacking, which limits researchers and community members in their ability to accurately understand and address areas of need and how best to develop and implement culturally tailored, evidence-based interventions. Additionally, socioeconomic variables such as culture, language, living conditions, education, income, social norms, social status, migration, and acculturation can have a significant impact on disease prevalence and outcomes (and may act to confound outcomes), and are key considerations in addressing SA health disparities. Related to this, family and trusted sources within the community can play important roles in facilitating participation in research and adherence to interventions. Finally, despite tremendous CVD and cancer risk in SA communities, culturally tailored prevention, diagnostic and treatment models are greatly lacking. As researchers, community members, and health practitioners collaborate to develop such models, cost-effectiveness analyses should also be included to help inform future policy decisions. Findings from South Asian Health: From Research to Practice and Policy, and ensuing research and service initiatives, will be used to further inform and develop policy and practice recommendations to address the pressing disparities in CVD and cancer risk experienced by SA communities.

The findings from each working group theme are summarized below:

Theme 1: Genetics, Epigenetics, Epidemiology and Pathophysiology

Research:

• Multi-center studies for biomarkers among SAs are needed (i.e. reference points for metabolic syndrome, BMI, waist circumference, diabetes risk scores, etc.).

• Nutritional epigenetics is significant for SA populations, and low intake of omega-3 and other nutrients may be risk factors for CVD and/or cancer.

• Lipoprotein(a), a potentially treatable risk factor for malignant heart disease, is a biomarker of emerging importance and should be further studied in SA populations.

• Microparticle exposure is associated with CVD and cancer risk, such risk needs to be assessed in SA populations in the U.S., especially among high risk occupational groups (e.g. taxi drivers, restaurant workers).

• Certain lifestyle interventions (e.g. yoga) may affect biomarkers and should be assessed.

Practice and Policy:

• Diagnosis guidelines have not been tailored for SA populations.

Theme 2: Lifestyle & Behaviors

Research:

• More research on dietary patterns of SA subgroups is needed to assess the potential effects on their health risks.

• Little is known on how to encourage culturally acceptable physical activity.

• More lifestyle intervention studies targeting SAs in the U.S. are needed.

• Sleep deprivation may affect CVD and cancer risk, and more research is needed, particularly among at-risk occupational groups (e.g. taxi drivers).

Practice and Policy:

• Community institutions (e.g. religious centers, food vendors, small business owners, community health centers) are key in initiating and maintaining healthful behaviors.

• SAs may utilize complementary treatments to help manage chronic illnesses, often without discussing use with their doctors. Herbal remedies may also contain harmful levels of lead, mercury, and arsenic.

Theme 3: Inflammation, Infection, Exposure, and the Human Microbiome

Research:

• More research is needed on the potential relationships between air pollution, CVD biomarkers, and cardiorespiratory illness among SAs, particularly among at-risk occupational groups (e.g. taxi drivers).

• Human microbiota have been associated with diabetes, CVD, and common cancers, though data on the gut microbiome among different SA populations is lacking.

Practice and Policy:

• Some South Asians are exposed to dangerously high levels of arsenic, which may originate from imported rice and well water in home countries.

Theme 4: Alternative Tobacco Products (ATP)

Research:

• More research needed on ATP availability, accessibility, labeling, importation, and sales to minors.

Practice and Policy:

• There is a general lack of knowledge and awareness of metabolic and carcinogenic risks from using ATPs, and research findings should be incorporated into community and medical education.

• Surveillance systems of alternative tobacco product (ATP) availability (type, amount, location) and use among all ages in the U.S. are not standardized.

• Local policies related to ATPs in areas of the U.S. with large and growing SA communities should be explored.

• Community and religious/cultural leaders should be engaged to disseminate information and improve messaging around ATP use.

• Prevention initiatives should start with youth, who are particularly susceptible to ATP use.

• There are no available South Asian-specific ATP cessation protocols or trainings.

• Product regulation (especially online) is lacking in the U.S., to the detriment of the community.

Theme 5: Mental Health and Stress

Research:

• U.S.-specific data on mental health and stress among South Asians is lacking.

• The meaning of ‘mental health’ in the SA community needs to be better understood through research on cultural nuances, colloquialisms, and misperceptions.

• The impact of stress and other psychological stressors on metabolic abnormalities should be examined and addressed in SAs.

Practice and Policy:

• Western models of diagnosis may require modification for the SA community.

• Non-Western treatment options for SAs in the U.S., which include empowerment and family unit interventions, should be explored further.

Theme 6: Healthcare Access and Patient-Provider Readiness

Research:

• Data gaps are rife in SA community health profiles and SA health-seeking behavior.

• The impact of the Affordable Care Act on SA access to care should be evaluated.

Practice and Policy:

• Providers lack evidence-based guidelines, best practices, and knowledge of cultural norms for SA patients.

• Access to care issues (e.g. language, cultural, and socioeconomic barriers) are generally known but inadequately addressed.

• Community members are important in facilitating SA access to care.

Future Plans

Findings from South Asian Health: From Research to Practice and Policy will be used as a foundation for further collaborative work and for translation into policy and practice. Future work will include solidifying linkages with similar groups in other cities with large South Asian populations; developing and conducting trainings for healthcare providers and South Asian serving community-based organizations on South Asian health needs, gaps, and strategies to address those gaps; conducting further needs assessment studies and population and patient based research addressing South Asian health disparities; and conducting additional literature reviews on successful approaches and strategies used to mitigate health disparities in other U.S. minority populations (i.e. African American, Hispanic).