Introduction
Effective healthcare begins with clear communication and understanding. Yet for many Sikh and Punjabi-speaking families across the United States, navigating the healthcare system often means describing symptoms, discussing diagnoses, and making life-altering decisions in a language that is not their primary language.
When patients cannot fully communicate with providers, preventive care can be delayed, and serious conditions can often go undiagnosed or untreated until they reach advanced stages. Addressing these gaps requires translation and interpreter services, and culturally competent care so everyone feels heard and respected.
Community-Based Insights: Listening First
Sikhs in Clinical Research (SICR), a growing initiative to raise awareness of clinical research among the Sikh community in the US, observes these challenges firsthand through grassroots outreach and education initiatives. SICR has organized more than 50 culturally grounded community engagement events across over 15 states, connecting with Sikh elders, parents, young adults, and families. Every conversation carried its own meaning. During these community health events, many participants prefer to complete feedback forms and review educational materials in Punjabi (the Sikh primary language). Families often share that they choose healthcare providers who speak Punjabi or Hindi because they feel heard, respected, and better understood. These experiences consistently demonstrate a simple truth: when patients feel understood, they engage more actively and earlier in their health. Their preferences reflect critical needs for clear communication, trust-building, and culturally responsive care so people are confident when asking questions or expressing concerns.
SICR provides disease awareness insights, promotes health screenings, and clinical research education in both English and Punjabi. One of the Sikh community members we met at our recent event, who is a medical professional herself, shared that she had her first mammogram, a screening usually recommended for women over 40. When the results came back, doctors found a lump in her breast and recommended further testing. When she shared this with her parents, they asked why she had gone for a screening when she had no problems. Their perspective reflected worry and a cultural belief, especially among older generations, that if you feel fine, there is no reason to get tested. She explained that screening is important because it can detect conditions early, before they become serious or difficult to treat. Fortunately, after additional tests, including a biopsy, the results came back negative. This conversation reminded us how important it is to address the lack of awareness, fear of results, and misconceptions that medical screenings can create problems, which still exist in our community. It highlights why community education, outreach, and guidance toward accessible screenings are so essential.
SICR has also developed a Sikh Patient Care Guide to help healthcare professionals better understand the Sikh faith (1). If the patient and physician do not speak the same language, every effort should be made to find an interpreter or translator (2). One encounter was with Dan Wilk, who shared with me his experience with a Sikh patient when he was a student pharmacist at Aurora St. Luke’s in Milwaukee. The patient had a blood clot, and the initially offered blood thinner, Heparin, contained animal products. The patient declined, and the care team provided Fondaparinux instead. After recently meeting me at a conference and reviewing our Sikh Patient Care Guide, Dan shared that he gained a deeper understanding of faith-based requests, the significance of hair in Sikh practice, and the importance of culturally competent care for Sikh patients.
The Scope of the Challenge
Language barriers remain one of the most significant obstacles faced by the Sikh community. The USC Center for Health Journalism highlights that Sikh immigrants, despite being one of the largest Indian immigrant groups in California, often face key language barriers in accessing care, including limited interpretation services and lower English proficiency (3). Moreover, elderly people are usually found to be hampered by language barriers, cultural stigma about seeking help, and a dependency on their children for transportation and interpretation (3).
What the Data Reveals
California state-level data further underscores the magnitude of need. Punjabi is the most commonly spoken language reported in California healthcare facilities, with 18,660 patients identifying it as their preferred language, far more than Hindi (5,670) (4). Census data also show that Punjabi speakers are less likely to speak English fluently compared with speakers of other Indian languages (5). Additionally, Medi-Cal enrollment trends demonstrate a steady increase in Punjabi-speaking beneficiaries (6), signaling growing demand for language-accessible services.
Although much of this evidence comes from California, Sikh communities are expanding nationwide, suggesting similar unmet needs across other regions.
Implications for Clinical Research
Language barriers extend beyond routine care and directly affect representation in clinical trials. When consent forms, study materials, and recruitment efforts are not culturally or linguistically accessible, it could limit the participation of the community. Furthermore, culturally relevant educational materials are needed to explain clinical trials, the importance of representation, and how the process works.
At the National Institutes of Health (NIH), engendering trust and confidence in the research it supports remains one of its highest priorities. Three principles guide these efforts: engaging in open, honest dialogue; acting with transparency; and delivering on its commitment to advancing science and improving health. The NIH endorsed the recommendations given by Novel and Exceptional Technology and Research Advisory Committee (NExTRAC) as a roadmap, which focus on providing a clear vision and framework for maximally involving patients and communities in clinical research, ensuring that people and communities have meaningful input into the agenda and direction of research that is relevant and impactful for them and increasing transparency regarding how research participant data are utilized to move the scientific enterprise forward (7).
Regulatory Perspective: FDA Guidance
Over the past several decades, the U.S. Food and Drug Administration (FDA) has encouraged enrollment practices that better reflect the populations likely to use medical products after approval. Recent FDA guidance released in Dec 2025 recommends that sponsors take proactive steps to increase representative enrollment, including (8):
● Fostering community engagement through medical societies, advisory boards, focus groups, disease registries, and community-based participatory research
● Partnering directly with trusted community leaders to co-design research approaches
● Providing cultural competency and proficiency training for investigators and research staff
● Holding recruitment events during evenings and weekends in accessible, trusted locations such as places of worship, community centers, festivals, and neighborhood gathering spaces
● Collaborating with patient advocacy organizations to educate communities about research participation
● Engaging patients, caregivers, and coordinators early in protocol design to identify barriers to enrollment
● Ensuring trial sites are located in different geographic areas where underrepresented populations receive care
● Selecting study teams that reflect the demographics of the communities they serve
The FDA also highlights the importance of analyzing clinical trial data by race and ethnicity, noting that differences in treatment response may stem from genetic, environmental, or sociocultural factors. These recommendations closely mirror the community-based strategies already being implemented by SICR.
A Path Forward and Call To Action
For the Sikh community and other underrepresented populations, progress will depend on:
● Professional interpretation services, translated materials, and consent documents
● Culturally competent training for healthcare and research staff
● Partnerships with trusted community organizations
● Geographically accessible research sites
● Early and continuous patient engagement
When these elements are present, participation becomes possible, and trust becomes sustainable.
Every patient deserves to understand their care, ask questions confidently, and feel respected within the healthcare system. With these foundations, we can overcome disparities, improve prevention, strengthen outcomes, and make research more representative.
References
- Handbook_for_healthcare_workers FINAL.pptx
- Bioethics for clinicians: 19. Hinduism and Sikhism - PMC
- Language barriers cripple Sikh immigrants’ access to health care | USC Center for Health Journalism
- Preferred Languages Spoken in California Facilities - HCAI
- B16001: Language Spoken at Home by ... - Census Bureau Table
- Primary Language of Newly Medi-Cal Eligible Individuals - Dataset - California Health and Human Services Open Data Portal
- Roadmap for Engaging the Public as Partners in Clinical Research | National Institutes of Health (NIH)
- Enhancing Participation in Clinical Trials — Eligibility Criteria, Enrollment Practices, and Trial Designs | FDA
