Navigating Online Patient Experiences of Genomic Medicine: Identifying and Overcoming Obstacles for African American Communities

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ABSTRACT/PROJECT SUMMARY Background. Genomic medicine has the potential to optimize diagnostic, risk prediction, prevention, and treatment decision-making processes. As technologies for measuring genetic variants have become more cost-effective and improved, clinical integration of genomic medicine has been surprisingly slow. For genomic medicine to be successfully implemented across specialties and across demographics, the systemic barriers that patients experience need to be identified and addressed. Significance and Innovation. Most of the literature that has investigated these barriers examined them in relation to a specific disease. Rarely have studies contextualize barriers to genomic medicine implementation within macro-level factors across a spectrum of diseases and with a focus on how these barriers are differently experienced by African Americans. Given the nascence of clinical applications of genomic medicine and the popularity of social media, a diverse body of patients have begun to share experiences about navigating genomic medicine on online health networks. Widespread utilization of such social media can help researchers access populations who have been difficult to recruit for research, and thus to provide a more robust and diverse sample for understanding barriers experienced by underserved populations. Furthermore, targeted interventions spearheaded by these online health networks could be used in clinical care to help interested patients. To our knowledge, only one study has investigated patients' social media discussions of genomic medicine and this study did not examine patient reported barriers. Our project would be the first to tap this dataset to identify systemic barriers that we suspect have been overlooked and which have a greater effect on African Americans. Goal. Our goal is to build a more holistic understanding of the multi-level barriers that patients, especially African Americans, experience when attempting to receive genomic medicine. Subsequently, we will conduct a pilot intervention to assess whether online health networks might have the potential to mitigate some of these barriers. Methods. To advance the implementation of genomic medicine in clinical care, we will examine organic conversations about patient-reported barriers on an online health network and investigate the extent to which these barriers differ for African Americans. We will then test an intervention that addresses patient-reported barriers through a Virtual Advisory Board (VAB) with a genetic counselor who will answer patient questions.