Advocates in Action: Recent Episodes
National Patient Advocate Foundation
Have you ever felt intimidated, confused, or overwhelmed when trying to navigate the health care system? In those moments it can be hard to advocate for yourself and those you care about. Join our host Ashley Danyel Freeman as she speaks with patients, providers and caregivers who have found the strength to advocate for equitable access to affordable quality health care. Advocates in Action is created by the National Patient Advocate Foundation, a non-profit with the objective of prioritizing the patient voice to achieve person-centered care. We are dedicated to amplifying the powerful stories of individuals and the collective needs of various communities across the country.
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=Z39.88-2003𝔯_id=ori%3Arid%3Acrossref.org𝔯_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:
- ABIM Foundation's Building Trust Initiative: https://buildingtrust.org/author/lnetwork/
- ABIM Foundation's Health Equity Background Paper: https://abimfoundation.org/wp-content/uploads/2020/07/Foundation-2020-Forum-Background-Paper.pdf
- The White Dress Project focusing on fibroid advocacy and empowerment: https://www.thewhitedressproject.org/
- Therapy For Black Men: https://therapyforblackmen.org/
- Therapy for Black Girls: https://therapyforblackgirls.com/
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.
Everything that happens in your life affects your ability to be healthy, to be well, and to be yourself. It's integral to connect clinical experiences to lived experiences happening outside of the doctor's office- in our communities, families, and neighborhoods. Kellan Baker reminds us that patients are experts in themselves and should be respected as partners in their healthcare journey. Listen as he shares with us the highest goal of health equity is to be fully ourselves. It makes it possible for everyone to be who they are and receive quality and equitable care based on their individual needs defined by their identities, bodies, and circumstances in life. Kellan challenges us to see all the possibilities available when all people have access to benefits, protections, and resources that allow us to be our healthiest.
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.
When conducting research how do you build a healthy relationship with the community you are working with? Trust is a key component especially in marginalized communities that have a history of being harmed and mistreated. Katie Cueva shares that it's integral for researchers to be invited into communities and ensure that their intentions are centered around the best interest of those who they serve. Listen as Katie shares about the historical context of racism and colonialism in Alaska and how that impacts healthcare delivery.
Key living conditions such as safe housing, transportation, violence, access to nutritious foods, and polluted water all have a profound impact on our health outcomes. Dr. Zinzi Bailey explains what social determinants of health are and how they shape the landscape of our health journey. How are the social systems of racism, classism, heterosexism, and ableism driving the pattern and distribution of living conditions? Listen as Dr. Bailey challenges us to break the preconceived notions that we have created that connect these inequities to poorer health outcomes.
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.
Every day, our experiences are shaped by our race, gender and even our age. But how does our identity shape the health care we receive and provide? Listen as Hanane Abdalla, Arthur Pope, MD, PhD and Sandra Sufian, PhD, MPH share their stories about how their identities impact their lives, their work and their ability to deliver and receive equitable health care.
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.
The health concerns of Black women are frequently dismissed which contributes to the growing disparities and worse health outcomes. Listen as Adrienne Moore, a two-time cancer survivor, respiratory therapist and patient advocate shares her harrowing story about how identity delayed her cancer diagnosis and inspired her to become an activist seeking health equity for young, Black women whose voices often go unheard.
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.
When we redefine health literacy as clear health communication it allows for accountability to be shared with all parties involved instead of placing the onus and understanding solely on the patient. Derek McCracken challenges us to view the ability to express ourselves easily and articulately as more than just a state of literacy, but instead as a process. Listen as he shares how narrative medicine is built on the pillars of attention, representation, and affiliation to equip health care providers with the tools to give and receive stories, listen actively and write reflectively which creates a safe space for patients. Derek explains how the tools he received through his narrative medicine training help him connect with patients and empower them to have the agency and creativity to communicate their experiences along their health care journey.
When we say health literacy what do we really mean? Our choice of language and the titles we attribute to people is multilayered. Lisa Stewart dissects ways we can approach communication with a spirit of respect and compassion which allows us to understand each other better and mitigate bias. This helps us realize that literacy is a responsibility of all parties involved. We can discover more specific terms that adequately explain what we mean such as structural or social determinants of health literacy. Listen as Lisa illustrates the type of health care environment that she envisions that would encourage patients to feel supported when asking questions, provide hands on opportunities to learn about how the body works and allows providers the resources and time to connect with patients.
Your primary care physician can sometimes be the provider that you interact with the most, so it would be ideal for that relationship to be a trusted, consistent, safe space for you. Dr. Carl Earl Lambert Jr. pursued family medicine so he could build lasting relationships with his patients, earn their trust and help them take ownership of their health care journey. Listen as he shares with us the "check in and check in often" method, the art of inquiry and other approaches he takes to ensure that effective communication is a two-way street between him, his patients and the full health care team. Through using shared decision making, he gets to co-create a plan with his patients that focuses on their goals and concerns. Dr. Lambert exemplifies how to center primary care with humility, respect and compassion to build strong relationships that leads to great outcomes.
Human connection is essential to building relationships and communicating effectively. Sometimes we overlook the power of these elements when thinking about the relationship between providers and their patients. Beverly Rogers is an 80 year old breast cancer survivor, advocate, caregiver and entrepreneur who uses her experiences and expertise to help empower other patients. She shares tangible examples of successful communication methods she and her provider use. Listen as Beverly highlights some of the common misconceptions about senior citizens and tips on how to make sure respect and trust is interwoven into your relationship with your provider.
In this episode, Christine Wilson, vice president of advocacy communications and marketing for the National Patient Advocate Foundation, describes how we can redefine and reframe health literacy and the actions we can take to help facilitate equitable health care for patients, families and communities. She shares examples of how when communication is a two way street between patients and providers it can lead to successful outcomes. Listen as Christine explores the communications barriers and the implicit and explicit bias many patients face, particularly BIPOC patients, in accessing and navigating the health care delivery system.
Patients sometimes have to make difficult decisions when pursuing the quality and affordable health care they deserve. When financial navigators and the full care team work together to find solutions for patients it results in better outcomes. Through Zinkeng Asonganyi's career he has worked closely in oncology and pharmacy administration which has allowed him to have a deep understanding of the intricacies of financial and social needs. Listen as he shares about the importance of financial navigation and how it bridges the gap between the health system and the patient.
The experiences of patients should be the center of research, policy development, and health care. Susan Perez has devoted a large portion of her career to ensure that her work not only honors patients but incorporates their input at a high level. In order to truly develop solutions that address both financial and social needs, it's imperative to address the many different stakeholder voices that should be involved. Listen as Susan Perez discusses the importance of not only having cost of care conversations, but also being able to provide solutions when a patient discloses a challenge.
Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod
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As a teenager, Jamie Stokley became the caregiver for her mother and was determined to make sure that her mom lived a full life in spite of any health challenges. While navigating the health system, she realized the many gaps that existed. This experience led her to pursue a career in healthcare to help educate and support other families. Through Jamie's work she leads a staff of home health aides who provide direct in-home service to the elderly and disabled. Additionally, she has an advocacy organization that provides financial and social needs navigation to the clients as well. Listen as she shares about how she uses her own personal story to be a catalyst for change as she brings care to the community.
At a young age Mica Saunders developed a reverence and understanding of the elderly thanks to her mom taking her to work with her at an assisted living home. Mica's early exposure inspired her to create her own business Moxie Movez, where she does brain games and physical activity with the elderly to help them keep their mojo and stamina. Her knowledge and passion for this field equipped her to navigate her own personal caregiving journey with both of her grandmothers who were diagnosed with Alzheimer's. Mica shares how she was able to have patience and
In this episode, Rebecca Kirch, Executive Vice President of Policy and Programs for the National Patient Advocate Foundation, describes the important role social and financial needs navigation services contribute to advancing health equity. All people should have the ability to determine their health decisions based on what’s best for them in the context of their own circumstances, without worrying about financial devastation. Policies and programs expanding availability of needs navigation target the constellation of concerns including access and affordability challenges that patients experience by steering them to safety net solutions. Listen as Rebecca shares how National Patient Advocate Foundation and other partners are mobilizing behind new health equity policy approaches to make needs navigation part of mainstream medicine. It's a win-win strategy for helping all patients in all settings secure affordable, high-quality care.
Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod
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Brooke Flores has worked for Patient Advocate Foundation for three years helping clients find solutions one case at a time. Her area of expertise is in helping patients with appeals and denials. During Covid-19 she served a patient, Joe Sweeny and helped him navigate the reduction of a $175,000 medical bill. Listen as both of them recount the journey and provide a description of how Patient Advocate Foundation provides hope to clients as they navigate the healthcare system.
End of life care can be uncomfortable but there are many support systems in place to help patients and their loved ones navigate that unique time. James Johnson, a social worker at Multicare Home Health and Hospice in Tacoma, Washington shares how he empowers patients to communicate their preferences and serves as a connector between the patient, caregivers and providers. Listen as he shares stories about the people he has supported through their end of life to make sure quality and comfort was at the center of their care.
Jacqueline Beard has worked for Patient Advocate Foundation for 18 years helping clients find solutions one case at a time. Her area of expertise is in helping patients expedite their disability claims but as you listen you’ll realize that her work has creative nuances. A patient might call in about one particular issue but through compassionate listening, Jackie and other PAF’s case managers are able to uncover multiple ways to help serve the patient and get them the best care and overall quality of life.
This year, Patient Advocate Foundation is celebrating 25 years of providing service to people facing serious illnesses. In this podcast, our CEO Alan Balch talks about the work we do and why it is so important. He highlights the extraordinary contributions that PAF caseworkers make in helping patients and caregivers navigate a complex health care system. For so many people, being diagnosed with a serious or chronic disease disrupts their entire life and can with it crushing financial and social problems. People find themselves facing huge medical bills, needing help understanding their insurance coverage or finding a plan that works for them, or making hard choices about whether to fill prescriptions or buy groceries. PAF case managers work closely with individuals and families to solve these issues and become better advocates for themselves.
Contact our case managers for assistance: http://bit.ly/PAFcase
Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod
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At a young age Mica Saunders developed a reverence and understanding of the elderly thanks to her mom taking her to work with her at an assisted living home. Mica's early exposure inspired her to create her own business Moxie Movez, where she does brain games and physical activity with the elderly to help them keep their mojo and stamina. Her knowledge and passion for this field equipped her to navigate her own personal caregiving journey with both of her grandmothers who were diagnosed with Alzheimer's. Mica shares how she was able to have patience and understanding when her grandmother Daisy forgot who she was and made dancing videos with her grandmother Florence to make every day feel like a birthday. Now she uses her caregiving journey to help others have the tools and resources to support a loved one with dementia.
Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod
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Emily Brown’s commitment to helping people access equitable quality care was inspired by her watching a loved one navigate the health care system after being diagnosed with an illness. Listen as Emily shares how professional caregiving has been a constant theme woven throughout her career working at the Program for the All-Inclusive Care for the Elderly (PACE), Williamsburg Convalescent Center and Patient Advocate Foundation for the last 8 years. She shares about the mindset and approach she developed to consistently provide care with compassion.
Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod
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Crispín Goytia-Vásquez is no stranger to caregiving, she has provided care for many family members since her early 20s. Her experiences have taught her the delicate dance of caregiving, which is the balance she has found caring for someone while also respecting their autonomy. Crispin shares the importance of setting boundaries as a form of self-care. Hear how her and her husband helped each other survive Covid-19.
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Community health workers are an essential part of the caregiving team. Denise Smith who is the Executive Director of the National Association of Community Health Workers shares how trust is at the center of the work her team provides. Walking alongside those who you care for is truly the most compassionate way of approaching how to serve and help people at the highest level.
Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod
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You call it taking your grandmother to the doctor, but Bea Rector and her team at the Washington State Department of Social and Health Services help people understand they are actually caregivers, and provide them with the resources they need to fulfill that role. Bea talks about her state's program to give caregivers access to services ranging from transportation and housework to acupuncture. She also discusses the work they do to measure the impact of these services and their economic as well as human benefits. Bea's able to infuse her own experiences as a caregiver for her parents and in-laws into her work to help others at the highest level.
Connect with Washington State's Department of Social and Health Services on social media!
Twitter: @waDSHS
Facebook: Washington State DSHS
Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod
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Janice Williams began her career as a nurse twenty-five years ago, serving her community in a multitude of ways. Even with all of her health care experience and knowledge, nothing was able to fully prepare her for the journey of becoming a caregiver for her father. As she discovered all the strategy, knowledge, and rest she would need as a caregiver, it inspired her to start a non-profit, Caregiver's Respite in 2010 to support family caregivers through education, encouragement, and events. Janice shares how her faith is truly what helped her get through and now she is on a mission to strengthen others along their caregiving journey to carry the burden but also recognize the blessings.
Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod
Learn more about Janice's organization Caregiver's Respite: http://bit.ly/NPAFrespite
Have you or a loved one been impacted by Covid-19? Utilize our Covid Care Resource Center: https://www.patientadvocate.org/covidcare/
Visit our National Financial Resource Directory today to find ways to decrease the financial burden of medical treatment. You can filter our directory by your age, state, medical diagnosis and type of assistance needed. https://www.patientadvocate.org/explore-our-resources/national-financial-resource-directory/
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Shonta Chambers has been a caregiver for over 20 years, providing care for her mother who has multiple sclerosis and her father, a stroke survivor. In the last year, both of her parents overcame Covid-19. She needed all her professional skills and personal experiences to balance caring for her parents, being a mother, and keeping herself healthy. Shonta talks about the emotional and physical impact of this work and how she's honored to receive the calling for this journey because it allowed her to learn the real meaning of caregiving.
Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod
Do you need a case manager to help you navigate challenges while you seek the care you deserve? Contact our Case Management Services: https://www.patientadvocate.org/connect-with-services/case-management-services-and-medcarelines/
Have you or a loved one been impacted by Covid-19? Utilize our Covid Care Resource Center: https://www.patientadvocate.org/covidcare/
Visit our National Financial Resource Directory today to find ways to decrease the financial burden of medical treatment. You can filter our directory by your age, state, medical diagnosis and type of assistance needed. https://www.patientadvocate.org/explore-our-resources/national-financial-resource-directory/
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Naimi Pothiwala gives us hope for the future as a 20 year old undergraduate at East Carolina University she is making a difference in her rural community of Apex, North Carolina. After learning how to fluently speak Spanish she took a leap to become a translator at a mamography clinic. Pothiwala talks about how honored she is to serve in this role to truly empower women during some of the most intimidating and vulnerable clinical procedures. Listen as she shares her goals for the impact she wishes to make in rural communities after graduation.
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Are you in a rural area and need help accessing care? Visit our National Financial Resource Directory
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How can organizations within a state collaborate to ensure that their patients can access the care they need? By leveraging telemedicine and utilizing statewide partnerships that share the common goal of health equity for all. Listen as Suleima Salgado, the Director of Telemedicine for the Georgia Department of Public Health shares some of the best practices her team has used to keep patients and providers connected virtually across all 159 counties. Suleima and her colleagues exemplify the power a state can have when multiple entities work together to overcome access barriers to get patients access to care they deserve.
Watch a Video about Georgia's Telemedicine Network
Read More Georgia's Office of Telehealth & Telemedicine
Learn About Telemedicine in Your State: National Consortium of Telehealth Resource Centers
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Ed Cunicelli began his career over twenty years ago, photographing the White Mountain Apache reservation in partnership with the Johns Hopkins Center for Indian Health. Since then his journey has taken him back to locations ranging from Native American and rural communities to a the front lines of the Covid treatment in an urban hospital. Ed focuses on finding the joy, strength and resilience in the people he photographs and making his pictures a testament to the need for social justice and an agent for change.
Explore Ed's portfolio.
Visit our website to explore show notes, additional episodes and our mission.
Are you in a rural area and need help accessing care? Visit our National Financial Resource Directory
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What does data collection and analysis tell us about the issues that people face when they face serious illnesses and try to access health care? Kate Gallagher works with the Patient Advocate Foundation to learn what issues patients face, how they deal with these, issues, what gaps exist in accessing equitable health care and what impact does financial toxicity have on people’s live. Kate and her colleagues provide the information critical to understanding both individual experience and bringing about important improvements to our health care system.
Visit our website to explore show notes, additional episodes and our mission.
Are you in a rural area and need help accessing care? Visit our National Financial Resource Directory
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Finding appropriate treatment and support for a child with a rare disease is difficult in any circumstances, but it can be extremely challenging in rural Alaska. Specialists are few and far between and travel often involves hundreds of miles and long plane rides. Greta and Mary Middleton first crossed paths as they attempted to find good care for their children with special needs. They now work together to empower other families, locate and access good care and implement policies that address the complex problems they face.
Visit our website to explore show notes, additional episodes and our mission.
Explore information about the Alaska Highway system.
Learn more about Stone Soup Group and the ways they support families in Alaska.
If you are located outside of Alaska and are looking for family to family support, please visit Family Voices and Parent Center Hub.
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Michael Fratkin’s commitment to palliative care began with an important lesson his grandfather taught him when he was a boy. Today, he heads Resolution Care, bringing end of life care to rural communities in Northern, California. Fratkin talks about his commitment to caring for “people not patients,” and the need for a holistic approach to providing the highest level of palliative care to seriously ill people and their families. He is also a leader in telehealth, which has proved to be a very effective tool for reaching his patients in widely separated communities.
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Learn more about Resolution Care and their innovative approach using telehealth.
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Twitter: @MichaelDFratkin
Facebook: Resolution Care
LinkedIn: Michael Fratkin
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Jessica Jones has faced a chronic illness most of her life, but that didn’t prepare her for her son’s rare heart disease. Becky Barnes lost her sister to lymphoma and has had more than her share of health problems. Both women have transformed their own experience into commitments to help others in their rural communities in Indiana and Kentucky. Jessica is working to address food insecurity during the pandemic, while Rebecca helps people understand and access health care benefits. Both women speak powerfully to impact that one person can have in changing a community.
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Jessica Jones on Twitter @AdvocateGirly
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Beth Madison wasn’t surprised when she heard the diagnosis of rheumatoid arthritis. Her family had a strong history of this potentially crippling condition. She was, however, determined to carry on with her life and career as a science professor. She soon learned that her local doctors were unable to provide the advanced, aggressive treatment she needs, Instead of settling for those limited options, Beth used her skills to locate a practice able to give her the care she requires, and regularly makes the eight hour journey to Alabama and back to her rural home in Jackson, Tennessee, Beth also sees her illness as an opportunity to dig deeper into herself and find her reserves of courage, hope and faith.
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Beth volunteers for Global Healthy Living Foundation. Learn about their support program for patients.
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Welcome to Advocates in Action, a podcast created by the National Patient Advocate Foundation, a non-profit that develops initiatives promoting equitable access to affordable quality health care through policy action and partnerships. Our primary objective is to prioritize the patient voice in health system delivery reform to achieve person-centered care. We are dedicated to amplifying the powerful stories of individuals and the collective needs of various communities across the country.
In our first season we explore rural health in the United States. We feature patients, advocates and providers who are developing innovative, effective approaches to improving health care in their communities.On today’s episode we speak with Executive Vice President for Patient Advocacy and Engagement Gwen Darien. Listen as we introduce the mission of our organization, vision for this podcast and plans for our first season.