Personalized Medicine Initiative

Patient resource developed as part of initiative to explain genomic and genetic testing and how patients can advocate for their own care. Spanish version is available.

About the initiative

In 2019, Living Beyond Breast Cancer partnered with MD Anderson Cancer Center at Cooper on a Personalized Medicine Initiative to provide educational tools and workshops to low-income and ESL communities about personalized medicine.

These communities were identified due to the disparities in care that cause Black and Latina women to have poorer outcomes in their breast cancer care.

The initiative seeks to:

• increase patient knowledge of and access to genetic and genomic testing
• raise awareness of shared decision-making
• Provide educational resources for healthcare providers and their breast cancer patients.

This project was led by Stefanie Washburn, MSW, LSW, Manager of Healthcare Provider Outreach at Living Beyond Breast Cancer in collaboration with Generosa Grana, MD, FACP and Evelyn Robles-Rodriguez, DNP, APN, AOCN of MD Anderson Cancer Center at Cooper.

Survey on precision medicine, tumor testing, and genetics

The first phase of the initiative was to better understand the gaps in information about personalized medicine among the target population.

Leveraging data from a 2019 survey conducted by Living Beyond Breast Cancer in partnership with Facing Our Risk of Cancer Empowered (FORCE) that revealed confusion about the three different types of testing (genetic, genomic or tumor testing, and pathology), with patients understanding genetic testing the most and tumor testing the least, the team set-out to test the understanding of these same terms in low-income communities in Camden, NJ served by MD Anderson Cancer Center at Cooper.

Focus groups

LBBC facilitated 6 focus groups with 29 Black and Latina patients in 2022. The focus group aimed to learn about their understanding of genetic and genomic testing, shared decision-making with healthcare providers, and preferred educational approaches for learning complex information.

Key findings

Participants had limited knowledge of personalized medicine and genomic testing.

Black and Latina women being treated for or living with breast cancer rely on healthcare providers to share high-quality and accurate information and have high levels of trust in providers’ judgment and expertise. Participants described the role of their healthcare providers as follows:

• Directors of care
• Expert advisors
• Sources of emotional support and connection, and
• Sources of information on options.

Participants learn best when complex health information is offered multiple times throughout the treatment experience. Focus group results showed specific ways of communicating information that may be particularly valued and effective, including:

• Direct conversations with healthcare providers that include ample opportunity for dialogue
• Connections to peers (group or individual)
• Videos and visuals
• Reading materials
• Credible, reliable, and accessible online resources
• Educational resources should be available in the individual’s preferred language.

Healthcare provider training

The findings from the focus group led to the creation of a webinar for healthcare providers, Unraveling the strand: Navigating genomic and genetic testing with your patients, with Generosa Grana, MD, FACP and Evelyn Robles-Rodriguez, DNP, APN, AOCN of MD Anderson Cancer Center at Cooper.

This webinar aimed to help healthcare providers understand and communicate with patients about genomic and genetic testing including:

• The latest information on genomic testing (tumor biomarker testing) and genetic testing for an inherited mutation, with an emphasis on breast cancer
• Barriers in access to testing among patients from racial and ethnic minority groups
• Patient perceptions of genomic and genetic testing
• Psychosocial implications of genomic and genetic testing
• Strategies for increasing patient access to testing
• Best practices for communicating with patients about genomic and genetic testing

Patient resources

The final phase of the Personalized Medicine Initiative was the creation of an educational video in English and Spanish to help people diagnosed with breast cancer better understand personalized medicine, why genetic and genomic testing is important in cancer care, and how people can advocate for their own care.

These videos are available on LBBC’s YouTube Channel and will be distributed to people diagnosed with breast cancer via email, social media, and integrated into LBBC’s online content about personalized medicine. The videos will also be shared with healthcare providers so they may share it with their patients.

In the video, Evelyn Robles-Rodriguez, DNP, APN, AOCN, and Generosa Grana, MD, FACP, guide viewers through the complex world of genetic and genomic testing, how the tests are used at various stages of breast cancer, and how these tests might affect family members. They also share practical tips on overcoming disparities and becoming your own advocate in your breast cancer journey.

En el video, Evelyn Robles-Rodríguez, DNP, APN, AOCN, y Generosa Grana, MD, FACP, guían a los espectadores a través del complejo mundo de las pruebas genéticas y genómicas, cómo se usan las pruebas en las distintas etapas del cáncer de seno, y cómo las pruebas pueden afectar a los miembros de la familia. También comparten consejos prácticos para abogar por su cuidado medico y superar las barreras que previenen que uno tenga el cuidado que necesita en su tratamiento del cáncer de seno.