Abstract B023: Incorporating the Patient Voice: An Evaluation of NCI-Designated Cancer Centers and Patient Reported Experiences with Genomic Medicine
Authors: Andriessen Amanda S. , Saulsberry Loren 
Published: September 2024

Since the National Cancer Act established the Cancer Centers Program in 1971, NCI-designated cancer centers (NCI-CCs) throughout the country have been mandated to translate state-of-the-art cancer research to communities and enhance clinical care for patients within their catchment areas, including minority and underrepresented populations. Precision oncology, which leverages genetics to optimize personalized treatment plans for patients, has promising potential to address cancer health disparities. In this era of targeted personalized care, though genetics has been incorporated into cancer centers, it is unknown how these innovations are being communicated to the public and communities served. There is particularly limited knowledge surrounding how cancer centers may integrate patient reported experiences with genomics into fulfilling their overall mission and reducing cancer health disparities. The objective of this study was to evaluate how cancer centers are publicly sharing information related to their work in understanding and assessing patient experiences with the use of genetics to guide cancer care. For all NCI-CCs involved in clinical care (n=65), we conducted a review of publicly available and published information, using each cancer center website as a point of origin. While almost all the NCI-CCs discuss providing personalized care and perform genetic testing, we found that the majority (51%) indicate that they assess patient-reported outcomes with genomic medicine, such as symptom monitoring during clinical trials. Fewer (38%) indicated having at least one study or that they assess patient experiences and perspectives with genomic medicine that extended to broader measures, like hereditary testing or pharmacogenomic testing to guide treatment. Forty-five percent of NCI-CCs indicate that any pharmacogenomic testing is performed through standard care, research studies, or otherwise. Finally, about 1 in 3 (35%) indicate that they have departmental resources dedicated to monitoring patient experience at their institutions. Some centers described having an established infrastructure dedicated to measuring and incorporating patient reported experiences into programmatic activities, such as offices and annual events dedicated to patient experience. These centers reflecting a built-in infrastructure were 8 to 12% more likely to publicly communicate and describe targeted activities to assess patient reported outcomes and experiences with genomic medicine and/or provide genetic testing. The use of genomics in research and clinical care continues to expand, yet its impact on the minority and underrepresented communities that cancer centers serve remains uncharacterized. Comprehensive understanding of patient reported experience with genomic medicine is lagging and serves as a key opportunity to potentially address cancer health disparities. As leaders in cancer care, NCI-CCs have the opportunity to enhance communication with communities surrounding genomics and improve the patient-centered care they provide.

Citation Format: Amanda S. Andriessen, Loren Saulsberry. Incorporating the Patient Voice: An Evaluation of NCI-Designated Cancer Centers and Patient Reported Experiences with Genomic Medicine [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B023.