Advocates in Action

After receiving a medical diagnosis, a person begins a journey to learn about the condition, explore treatment options and advocate for themselves. Along this new path it's common to feel lonely, overwhelmed and defeated. Patient navigators are a resource that can help relieve some of those stressors while a patient is pursuing care. They provide support to help patients navigate through screenings, diagnoses, treatments and follow-ups. Listen as L. Tiffani Collins, Senior Program Administrator of Cancer Support Care SDOH Navigation Services at VCU Massey Comprehensive Cancer Center shares about the essential role patient navigators have in helping patients overcome barriers to accessing services and improve the continuum of care. This work is a part of National Patient Advocate Foundation's Shared Decision-Making at Critical Points in a Long Illness Journey, a project made possible in part by support from the Danaher Foundation.

There is a one of a kind connection you have when working to improve the health and wellbeing of the community you are from. Darryl Jefferson is committed to being the change he wants to see in his hometown of Jackson, Mississippi. Between his role as the Director of Heart Disease and Stroke Prevention Program for the Mississippi State Department of Health, Fannie Lou Hamer Cancer Foundation, and his own business, Darryl brings deep knowledge of his community, passion for his work and commitment to health equity  to his work. Listen as he shares about the importance of learning from communities by respecting the knowledge community members have and centering the solutions they believe in. This work is a part of National Patient Advocate Foundation's Shared Decision-Making at Critical Points in a Long Illness Journey, a project made possible in part by support from the Danaher Foundation. 

When a person is diagnosed with cancer they can choose to walk that journey privately or lean on their support system to help them through it. When Desiree Nuckols received her breast cancer diagnosis at 28 years old, she decided to go through that journey with the help of her family. Just a few years prior Desiree's mother passed away as a result of breast cancer. Although the journey she was about to embark on was scary, it also led to a couple of blessings such as Desiree giving her life to God, her family being more unified than ever before, her learning how to advocate for herself at the highest level, and her paying the kindness that she received forward to other patients. Listen to hear how in the midst of the challenge, her family found moments of gratitude and joy. 

Do you get treated as though you are your doctor's only patient? Vanessa Spurlock did and that empowered her to have the confidence to make decisions along her breast cancer journey. Trust, respect, and care were the cornerstones of her relationship with her health care team at Virginia Commonwealth University's Massey Comprehensive Cancer Center. Vanessa didn't have prior knowledge about cancer so her providers educated her, explained different treatment options, told her to seek a second opinion if desired, and set her at ease during challenging moments. Over the course of her diagnosis and treatment journey Vanessa journaled and found a new version of herself that was centered around freedom. Now in her sixth year of survivorship she partners with newly diagnosed patients to help them find that freedom as well through their voice so they can advocate for themselves.

Join us as we relive our year long journey of traveling to Ruleville, Mississippi; Richmond, Virginia and Los Angeles, California to co-create workshops to learn from patients who are living with cancer and other chronic diseases, their caregivers, and some providers to understand what shared decision making means to them. Along this journey we learned history, made connections with people, and gained an understanding of what matters to patients and how they make decisions about important issues related to their health and lives. This work is a part of National Patient Advocate Foundation's Shared Decision-Making at Critical Points in a Long Illness Journey, a project made possible in part by support from the Danaher Foundation. 

To reduce health inequities, there has to be a clear understanding of the unique challenges being faced by that community. When evaluating the health of Hispanic and Latino populations, accuracy is decreased if you make generalizations for the whole population instead of analyzing the specific characteristics of each group because they are not homogenous. Listen as Dr. Luisa Borrell, shares the framework she uses to gain a comprehensive understanding of the health status of the various Hispanic and Latino cultures. As a social epidemiologist, her lens examines: ethnicity, socioeconomic status, education level, income, neighborhood, immigration status, and length of time in the United States. In a world of intersectionality, the fullness of a person's health experience is lost if the independent pieces are overlooked.

Resources for this Episode Include:

Racial Identity Among Hispanics: Implications for Health and Well-Being: https://ajph.aphapublications.org/doi/10.2105/AJPH.2004.058172?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub++0pubmed

The Impact of Salmon Bias on the Hispanic Mortality Advantage: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2546603/

The First Birth Control Pill Used Puerto Rican Women as Guinea Pigs: https://www.history.com/news/birth-control-pill-history-puerto-rico-enovid 

The Mexican-American War: https://www.thecollector.com/mexican-american-war-territory/ 

“There have been so many attempts to erase us, to destroy us, to take our lands. And we are still here, we're strong. We're one of the youngest and fastest growing populations in the country.” – Erik Stegman, Executive Director of Native Americans in Philanthropy. Imagine being forcibly separated from your family, home, and community. For hundreds of years that was the reality of many Native people who were removed from the lifestyle they were accustomed to and forced into boarding schools created by the federal government. Erik Stegman shares a historical and personal perspective on the generational trauma and impact caused by the multiple harms done to Native people. He brings every aspect of his identities into the work that he does around tribal law, policy issues and advocacy. Listen as he speaks about the hope he feels for the future of Indian Country.

The famous Walt Whitman quote, "I am large, I contain multitudes," reflects how multi-faceted our identity is. Does our health care system reflect the celebration and acceptance of that diversity? Listen as Dr. Erica Concors shares how they've been able to use community organizing and advocacy skills to create more welcoming medical spaces for the LGBTQ+ community. Providing a safe space for transgender and non-binary people to receive quality and equitable care based on their individual needs defined by their identities, bodies, and circumstances in life allows everyone to be their healthiest.

This season is brought to you in collaboration with American Board of Internal Medicine (ABIM). This compliments the ABIM Foundation's Building Trust Initiative. We will highlight different stories and context that illustrate racial, ethnic, and gender health disparities. Our goal is to provide this historical context, show how it is connected to inequities that still happen, and share how changemakers are taking action to ensure that history doesn't continue to repeat itself. 

Resources for this Episode Include: 

Emergency Residents' Association (EMRA)’s Diversity & Inclusion Committee Webinar - LGBTQ Health: 101 for the EM Provider: https://vimeo.com/783395419 

In this seventh season host, Ashley D. Freeman has an inter-generational conversation with Pamela Browner White about their origin stories and how they were first introduced to the healthcare system. How did caregiving at a young age for their parental units impact their outlook on advocacy and how to navigate the healthcare system? Listen as they exchange stories about harms endured by black people through the experiments on Henrietta Lacks and J. Marion Sims' experiments on black women for the advancement of gynecology. Even Ashley and Pamela's own personal encounters leads them to share that improving the quality of healthcare for African American people is the tide that lifts all ships. 

This season is brought to you in collaboration with American Board of Internal Medicine (ABIM). This compliments the ABIM Foundation's Building Trust Initiative. We will highlight different stories and context that illustrate racial, ethnic, and gender health disparities. Our goal is to provide this historical context, show how it is connected to inequities that still happen, and share how changemakers are taking action to ensure that history doesn't continue to repeat itself. 

Resources for this Episode Include:

Listen as Reggie Tucker-Seeley shares his professional career journey and the path that has led him to his current role so he can be closer to creating solutions in the communities and populations he wants to serve. With over 20 years of public health experience, he walks us through the importance of not only defining health equity, health disparities and social determinants of health, but also creating a framework for creating change in those areas. 

This season is brought to you in collaboration with ZERO- The End of Prostate Cancer (ZERO). This builds upon the Promoting Health Equity in Cancer Care: A Virtual Workshop hosted by The National Academies of Sciences, Engineering, and Medicine (NASEM) which was co-chaired by Gwen Darien of NPAF and Reggie Tucker-Seeley of ZERO.