Introduction
Chronic diseases often develop quietly, but their consequences can persist throughout life. Conditions such as diabetes, hypertension, high cholesterol, cardiovascular disease, and cancer contribute substantially to illness, disability, and preventable complications. Timely identification of health risks and disease is therefore important. It depends not only on access to healthcare, but also on whether individuals recognize their risk, understand their family health history, participate in appropriate preventive screenings, and seek care when needed. Identifying health concerns at the appropriate time can create opportunities for earlier evaluation, intervention, and appropriate treatment, with the potential to improve long-term health outcomes.
Sikhs in Clinical Research (SICR), a growing community-focused initiative, works to increase disease awareness, promote preventive health screenings, and improve understanding of clinical research within the Sikh community. Since its inception, SICR has expanded its outreach to more than 16 states and conducted more than 55 community-based health and research outreach events. From October 2025 till September 2026, 11 outreach events were done in Illinois, Iowa, Indiana and Wisconsin.
An important component of these initiatives is the use of pre- and post-engagement surveys to better understand community health needs and assess changes in awareness following educational activities. The data presented below represent findings collected from October 2025 through September 2026. For findings from earlier reporting periods, please refer to the previous SICR impact reports [Our Impact - Sikhs in Clinical Research ].
During this reporting period, feedback surveys were completed by 191 participants, among whom a range of chronic health conditions were reported. Of these participants, 110 provided additional information related to healthcare access, preventive screening practices, and health awareness. Smaller participant groups contributed information to specific questions where applicable. Because the number of respondents varied across individual questions, findings should be interpreted according to the applicable sample size for each measure.
Together, these findings provide insight into the intersection of chronic disease burden, health awareness and preventive health behaviors within the community. They also demonstrate the importance of community-based health initiatives that extend beyond disease identification. Effective community health efforts can help individuals understand their personal and family health risks, recognize the importance of appropriate screening and timely evaluation, navigate available healthcare resources, and feel empowered to take informed action about their health.
Chronic Disease Is Already Part of the Community Health Landscape Among the 191 participants, chronic health conditions were commonly reported. Diabetes was the most frequently reported condition, affecting 59 individuals (30.9%), followed by cardiovascular disease in 49 individuals (25.7%) and high cholesterol in 41 individuals (21.5%). Arthritis was reported by 20 participants (10.5%). Other conditions reported by participants included asthma, cancer, depression, chronic obstructive pulmonary disease (COPD), glaucoma, urticaria, atopic dermatitis, and hypothyroidism.
The relatively high prevalence of diabetes and cardiovascular disease highlights the importance of addressing modifiable risk factors and promoting regular monitoring to help reduce the risk of long-term complications associated with these conditions.
These findings are particularly important because chronic diseases often coexist and share interconnected risk factors. For example, diabetes and high cholesterol are both associated with increased cardiovascular risk. Although examining individual conditions provides useful information, considering the broader pattern of chronic disease offers a more comprehensive picture of community health and can help inform prevention and health-promotion efforts.
Looking Deeper: A 110-Participant Subset
Within the overall group of 191 participants, 110 individuals from Illinois had additional healthcare-related information available. These 110 individuals were not a separate population; rather, they represented a subset of the original participant group.
This subset provides another dimension to the overall health picture. While the data from all 191 participants describe the prevalence of chronic conditions, information from the 110 participants provides additional insight into healthcare access, preventive screening, and health education within the same patient population.
One of the measures examined was health insurance coverage. Among the 110 participants, 78 (70.9%) reported having health insurance, while 32 (29.1%) reported that they did not. Thus, nearly three in ten participants in this subset reported being uninsured. Lack of insurance may create financial or access-related barriers to obtaining regular healthcare and preventive services, highlighting the importance of considering healthcare access alongside the burden of chronic disease.
Because diabetes was common among participants, diabetes education was an important component of our outreach. Participants were asked whether they knew that having a family history of diabetes can increase their own risk of developing the disease. Before the educational interaction, 34 participants (31%) reported that they were aware of this connection. Following the educational interaction, 76 participants (69%) reported learning this information. This was one of the most encouraging findings from the outreach.
Having a family history of diabetes does not mean that an individual will necessarily develop the disease. However, understanding this risk may encourage individuals to discuss their family history with a healthcare provider, obtain appropriate screening, and take steps to support their overall health.
The importance of diabetes awareness was also evident among the 29 participants who reported having type 2 diabetes, 28 provided information about diabetes-related complications. Of these, 14 (50.0%) reported experiencing complications. This finding highlights the importance of early awareness, appropriate screening, and ongoing diabetes management to help prevent or reduce diabetes-related complications.
Prevention in Practice: What Screening Data Tell Us
Among the 110 participants for whom screening information was collected, 49 were women and 61 were men. Among women, 22 of 49 (44.9%) reported having undergone mammography, while 23 (46.9%) reported receiving a Pap smear. In contrast, only 3 women (6.1%) reported HPV testing.
Screening procedures applicable to both men and women also showed variable participation. Seventeen of 110 participants (15.5%) reported undergoing colonoscopy. HbA1c testing was the most commonly reported screening measure overall, with 37 participants (33.6%) reporting that they had undergone testing. Other preventive services had much lower reported participation, including low-dose CT (LDCT) lung cancer screening in 1 participant (0.9%), skin checks in 2 participants (1.8%), and endoscopy in 1 participant (0.9%). Among men, 7 of 61 (11.5%) reported having undergone PSA testing.
These findings suggest opportunities to strengthen awareness and participation in preventive screening. Early detection can improve the management of many conditions, but appropriate screening depends on factors such as age, sex, personal health history, and individual risk. Encouraging participants to understand their risk factors and discuss recommended screening options with a healthcare professional may help support earlier detection and better health outcomes.
Clinical Research Education
SICR is also working to improve clinical research literacy so that community members better understand their options and can make informed decisions about their health. Participants reported learning about several aspects of clinical research. When asked what they considered the best thing they learned, the most common response was that clinical research may provide opportunities for early access to investigational treatments or interventions, selected by 52 of 110 participants (47%). Other participants identified learning that participation in clinical research is voluntary (34, 31%), that health insurance is not necessarily required to participate (33, 30%), and that treatment can be provided at no cost to participants (25, 23%). Additionally, 11 participants (10%) identified learning that studies may provide compensation or reimbursement for time and travel as the best thing they learned. These findings show that participants gained knowledge across multiple aspects of clinical research, with early access to investigational treatments or interventions emerging as the most frequently selected best thing they learned.
For those who want to explore clinical research, follow-up is conducted through calls, and we help connect them with clinical trials available in their area.
Together, these findings highlight the value of clinical research education in helping community members understand how research works, what participation may involve, and what questions they may want to ask before deciding whether a study is right for them. Improving research literacy can help individuals make more informed and confident decisions about participation in clinical research.
Looking Ahead
The findings from these community events highlight both progress and areas where continued work is needed. Chronic diseases such as diabetes and cardiovascular disease remain important health concerns, while gaps in preventive screening, insurance coverage, and health awareness persist. For some community members, lack of health insurance may also create barriers to accessing preventive screenings and other healthcare services.
At the same time, the findings demonstrate the potential value of community education. When people learn about their family health risks, understand the importance of appropriate screening, and become more familiar with clinical research, they may be better prepared to ask questions and make informed decisions about their health. Moving forward, SICR will continue to strengthen these efforts by bringing simple, trusted, and culturally relevant health information directly into the community.
Understanding a community’s health needs, concerns, and knowledge gaps can help make healthcare education and clinical research more accessible and relevant to the people they are intended to serve. Meaningful engagement should begin long before someone becomes a patient or is approached about participating in a clinical trial. By creating trusted spaces for education, listening to community voices, and making health information easier to understand, stronger relationships can be built over time. The collaborations with industry partners can support earlier awareness, better-informed healthcare decisions, greater understanding of clinical research and more inclusive participation in future research. Ultimately, this work can help ensure that advances in healthcare reach and reflect the communities they are designed to benefit.
~ Ekta Grewal
(Founder, Sikhs in Clinical Research)
