Community-based engagement often reveals realities that might not be captured in datasets or clinical reports. Through outreach events, educational booths, surveys, and patient interviews conducted across the Sikh community in the United States, recurring themes have emerged around cancer awareness, fear of screening, and limited understanding of clinical research.
These insights reflect lived experiences and community perceptions that identify gaps and areas where oncology stakeholders must pay closer attention.
Fear and Misconceptions Around Cancer Screening
One of the concerns raised by community members is fear related to cancer screening and diagnostic procedures. Some individuals hesitate to pursue screening due to misconceptions that diagnostic tests themselves may cause harm or long-term side effects.
This highlights an urgent need for education to go beyond reminders and focus on helping individuals understand what screening involves, why it matters, and the benefits of early diagnosis.
Lung and Liver Cancer: Challenging Assumptions
During outreach, liver cancer and lung cancer cases have emerged in discussions, raising questions about possible contributing factors such as alcohol consumption or smoking. While alcohol use and smoking may be relevant factors, these observations alone are insufficient to draw conclusions. They reinforce the need for structured surveys to understand patient characteristics and risk factors better.
Cancers Observed Across the Community
- The following cancer types were observed during community outreach:
- Breast cancer
- Ovarian cancer
- Multiple myeloma
- Blood cancer
- Thyroid cancer
- Prostate cancer
- Colon cancer
- Stomach cancer
Late-stage presentation raises concerns about the challenges the community faces, including limited awareness, delayed care, cultural stigma, language barriers, and lack of trust.
Survivorship and Remission: A Striking Gap in Clinical Trial Awareness
Some individuals we met at our educational booths identified as cancer survivors or individuals currently in remission. When asked whether they were aware of clinical trials as a treatment option during their cancer journey, the most common response was both simple and concerning: ‘No.’
This pattern points to a major missed opportunity. Are clinical trials frequently perceived as a last resort, or are they not discussed at all, even in cancers where research options may be the only path forward? Survivors often report that clinical research was never presented as an option, leaving them unaware of opportunities to access innovative treatments or contribute to advancing care.
Breast Cancer Awareness: Measurable Impact at the Community Level
During community engagement events, while some community members had reported prior knowledge of mammograms and breast self-examinations, many indicated learning new information through these events.
Community members demonstrated improved understanding of how lifestyle factors, including a healthy diet, physical activity, limiting alcohol intake, and avoiding smoking, can reduce cancer risk.
Notably, almost every woman we spoke with reported increased willingness to pursue mammograms and expressed intent to perform regular self-examinations following the event. This reflects a meaningful shift toward proactive health behaviors when education is delivered through trusted, culturally relevant channels.
Centering Patient Voices
Sikhs in Clinical Research (SICR) has been amplifying patient voices through patient-focused perspective series, providing space for survivors to share their healthcare journeys in their own words. These interviews reveal resilience but also highlight systemic gaps that must be addressed.
As one breast cancer survivor shared:
‘You have to be your own advocate. It’s your body.’- Lilly Kaur
Another reflected:
‘None of my doctors ever told me that a clinical research option exists. I would love to participate in it.’ — Jasbir Kaur
A patient with multiple myeloma shared:
‘The medication would otherwise be extremely expensive, but through the clinical trial, we are receiving access at no cost. The words ‘clinical trial’ can create fear. People assume it means being experimented on or treated like a guinea pig. Such misconceptions exist, and awareness is really needed so people understand how clinical trials work and the safeguards and close monitoring that are in place.’
The same patient also shared that they understood transplantation often leads to hair loss. In the Sikh faith, maintaining uncut hair (Kes) is an article of faith and a core part of Sikh identity. Hair is not removed except in serious medical situations. Throughout their medical journey, they had the opportunity to communicate with healthcare professionals about their Sikh beliefs and articles of faith, including the respectful handling of these articles during imaging procedures such as MRIs, X-rays, and other medical tests. They embraced this as an opportunity to share about the Sikh faith and foster cultural understanding.
These statements echo a broader pattern seen across underrepresented communities and highlight the need for culturally competent care.
When patients are informed about clinical research and healthcare providers are culturally trained, it strengthens trust, improves individual access, and enhances trial diversity.
Building Trust and Understanding Around Clinical Trials
SICR has prioritized education around clinical trials, particularly in oncology, where research may sometimes be the only available option. Efforts focus on explaining how clinical trials work, what safeguards are in place to protect participants, and how informed consent is ensured.
SICR has developed educational brochures and videos in English and Punjabi (Sikh Primary language) covering information on various cancers and explaining how clinical trials work and how they may help.
These materials are distributed during educational booths at large Sikh gatherings, where face-to-face engagement builds trust and encourages open dialogue.
Interpreting These Insights Responsibly
These insights are based on a limited number of survey respondents and community interactions. Participation varied across events, and not all individuals completed surveys. As such, these observations should be interpreted as indicative rather than comprehensive.
However, community insights often serve as early signals, highlighting where better communication and sustained engagement are urgently needed.
A Call to Action for the Oncology Ecosystem
If oncology stakeholders are serious about improving outcomes and advancing equity, community engagement cannot be an afterthought. Researchers, clinicians, sponsors, and policymakers must:
- Invest in early, culturally tailored education
- Address fear and misinformation around screening
- Normalize discussions about clinical trials across the continuum of cancer
- Partner with trusted community organizations to meet people where they are
Improving cancer outcomes begins long before diagnosis. It starts with listening, building trust, and ensuring communities are informed, empowered, and included, not only as patients but also as partners in progress.
By Ekta Grewal
Founder, Sikhs in Clinical Research (SICR)