ASPO Abstracts
Engaging Patient Advocates in Breast Cancer Research: Opportunities to Reduce Breast Cancer Disparities
Category: Cancer Health Disparities
Conference Year: 2023
Abstract Body:
Purpose Inclusion of patient advocates in breast cancer research have the potential to reduce breast cancer health disparities and enhance implementation of research; yet patient-advocates are often not included in clinical research. We developed a patient advocate training program to increase biomedical knowledge, address patient access barriers and to increase participation in genomic research among Black women in 5 geographical cities with the highest breast cancer disparities. Materials and Methods 136 women were recruited to become a breast cancer patient advocate. Training materials on self-advocacy, diagnostic screening, clinical trials and healthcare discrimination topics were developed and evaluated by field experts and content designers. Women received the final training materials which included, (videos and modules). We surveyed patient advocates on their knowledge of biomedical information, their attitudes, and beliefs toward being a patient advocate, healthcare access barriers and their participation in breast cancer research. We conducted bivariate statistics to describe the sample and factors associated with completing the patient advocate training. Results 82% of the sample were Black, 18% were non-Black. 31% of women were between the ages 31 and 50. Overall, 82% of women completed the patient advocate training program and 63% completed the pre-post survey assessments. Navigating the health system (50%) and communicating with clinical providers (48%) were the top reported health care barriers at baseline. Following the patient advocate training women knowledge around genetic testing and clinical trials increased. Women also found the training helpful in preparing their readiness to communicate genetic risk information to their patient network. Conclusion This article provides an overview of training strategies to promote patient-advocates within biomedical research. Our training materials for patient advocates enhanced their biomedical knowledge and willingness to advocate for patients by 22%. Findings from this work highlight our strategies to optimize patient- advocates involvement with patients to ultimately improve uptake of mammography screening, genetic testing, and participation in clinical trials.
Keywords: patient-advocates; breast cancer ; survivorship; women; health disparities