Abstract 807: An ethno-phenomenology based approach to study breast cancer disparity in rural India
Authors: Debduti Dutta, Rupam Das, Chayanika Das, Tulika Sarma, Sonali Das, Anuja Dutta, Tutumoni Baishya, Lekhika Pathak, Bikul Das
Journal: Cancer Research (2024)

Abstract There are fundamental lack of right methodologies to study the breast cancer disparity in rural India. Here, we have used an ethnographic-phenomenology approach to study the disparity in breast cancer care in Assam by using retrospective database of a rural cancer care non-profit clinic, the KaviKrishna Telemedicine Care (KTC), set up 1994 to develop a CBPR based cancer care (Abstract 3342, AACR 2019). Methodology: For one and half years, the doctors, researchers, nurses, caregivers, and physician assistants of KaviKrishna Laboratory and KaviKrishna Telemedicine Care were interviewed (total number: 15), and plus literature of the lab and the clinic were studied. Then, the breast cancer patients (n=10) and the families were subjected to ethnographies-phenomenology study to find their experiences of treatment and suffering. Next, thematic analysis and grounded theory were applied to come up with novel approaches to reduce breast cancer disparity. For comparison, 5 patients from rich urban families were interviewed. Results: We found that 10/10 patients found it extremely difficult to navigate the complexity of care in urban hospitals, but found the KTC approachable and comfortable. Importantly, these 10 breast cancer patients were positively responding to our KTC based care services/focussed group discussion (https://zenodo.org/records/8062404). They revealed positive experiences in emotionally and psychologically dealing with diagnostic, surgery, and chemotherapy processes. Next, our analysis of the last 25 years of the care data at KTC showed that in rural population, the loweconomic status, inadequate access to breast cancer detection clinics, lack of awareness,indecisive treatment protocols and social stigma are the main reasons for breast cancer disparity. Grounded theory-based analysis indicates that cancer biomarker study in rural populations can be a suitable method for early detection. Whole genome sequencing of cancer tissue frombiopsy samples shall provide landscape of mutation in the entire coding as well as noncodingregions. Mutation profiling along with correlation studies from patients can lead to discoveryof novel marker(s). Primary health care clinics in rural areas can be trained to collect patientsamples, isolate genomic DNA and perform PCR for the markers (a similar model asfollowed during Covid-19). The PCR samples can be sent to non-profit advanced diagnostic center such as KaviKrishna Lab to perform sequencing to study mutation markers. The method is also cost effective to both thecare givers and the patients as compared to setting up advanced diagnostic lab in every part ofrural area. Conclusion: The community based participatory research based model developed by KTC can be an effective strategy to reduce breast cancer disparity in the rural population since the primary health clinics shall act as a bridge between geologically isolated areas and modern technology. Citation Format: Debduti Dutta, Rupam Das, Chayanika Das, Tulika Sarma, Sonali Das, Anuja Dutta, Tutumoni Baishya, Lekhika Pathak, Bikul Das. An ethno-phenomenology based approach to study breast cancer disparity in rural India [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 807.