Patient Partner Innovation Community Podcast

ATW Health Solutions, Inc.
  • 5.0 (5)
  • MEDICINE

Welcome to the Patient Partner Innovation Community Podcast, sponsored by ATW Health Soultions and Dr. Knitasha Washington. This podcast was created to inform patients, families and caregivers about important health transformation topics.

  1. JUL 14

    68. Diagnostic Safety and the Power of Patient Voice

    In this episode, host Desiree Collins-Bradley welcomes Janice Tufte, a nationally recognized patient advocate and diagnostic safety champion. Janice reflects on her personal and family history with missed diagnoses and how those experiences shaped her commitment to advancing diagnostic safety.  Together, they unpack the importance of trusting your gut, asking questions, and understanding your right to seek second opinions. A central focus of the conversation is the CFER-DS (Common Formats for Event Reporting – Diagnostic Safety) initiative, funded by AHRQ. Janice shares her experience as a patient subject matter expert helping to shape the tool, with a focus on making it accessible, fillable, and usable across care settings. The episode highlights the need for transparency, AI-powered reporting tools, and a cultural shift that supports non-punitive safety reporting by both patients and clinicians. It closes with a call to action: “report, report, report” to help prevent future harm and improve diagnostic outcomes for all.  Listeners will gain valuable insights into:  The personal and family experiences that shaped Janice Tufte’s passion for diagnostic safety.  The importance of empowering patients to question diagnoses and seek second opinions.  The CFER-DS (Common Formats for Event Reporting – Diagnostic Safety) initiative and how it supports diagnostic error reporting.  Challenges and opportunities in making diagnostic safety reporting accessible to patients and clinicians alike.  How cultural shifts, transparency, and AI can create safer, more equitable systems of care.  Bio: Janice Tufte is a nationally recognized patient advocate with over a decade of experience bridging lived experience with system change. She has co-led research like the LINCC project at Kaiser Washington and contributed to national efforts through PCORI, AcademyHealth, and multiple quality panels. Passionate about equity, she also leads grassroots work addressing poverty and addressing poverty and mentors patients nationwide.

    32 min

  2. MAR 19

    67. Patient Safety Stories: Sickle Cell Advocacy to Improve Healthcare Safety

    Kevin Wake, CMR, CHW, MS, is a 56-year-old patient advocate living with sickle cell disease. After health complications forced him to retire early from his pharmaceutical career in 2017, Kevin found his calling in patient advocacy. He began locally by joining the Uriel E. Owens Sickle Cell Disease Association of the Midwest and co-chairing his hospital’s Patient and Family Advisory Council (PFAC). His advocacy has since expanded to the state level and national collaborations with organizations like the Patient Partnered Diagnostic Center of Excellence. Throughout the podcast, Kevin highlights the power of patient voices in shaping healthcare quality and safety. He stresses the need for patients to be included in decision-making spaces, where their lived experiences can drive meaningful change. Listeners will hear how his and his family’s diagnosis journey and interactions with the healthcare system fueled his passion for advocacy, ensuring better care for those living with sickle cell disease. Listeners will gain insights into:  Tips for proactive care and self-advocacy. Understanding how bias can impact diagnosis and treatment. How sharing patient experiences can shape policies and improve healthcare practices. Bio: Kevin Wake is the chairperson for University Health’s PFAC. He is also the President of the Uriel E. Owens Sickle Cell Disease Association of the Midwest in Kansas City, KS. Kevin has a bachelor’s degree in Human Biology from the University of Kansas and worked in pharmaceutical sales and management for 23 years before taking an early retirement due to health complications from his sickle cell disease. He also has a master’s degree in Healthcare Informatics from Walden University and a Community Health Worker certification from the Sickle Cell Disease Association of America.

    37 min

  3. 09/17/2024

    66. Empowering Patients: Autoimmune Advocacy and Research

    In this episode, Reggie Barnes, Director of Patient Partnership for the Autoimmune Registry, shares his personal journey of being diagnosed with a rare autoimmune condition called GAD65 autoimmune encephalitis, which causes debilitating inflammation in the brain and spinal cord, leading to seizures and other disabling symptoms. 8% of the U.S. population is living with an autoimmune condition, and 80% of those with autoimmune conditions are women. The conversation explores the marred history of clinical trial participation for black and brown Americans. This history emphasizes the importance of accountability, patient protections, and trusted sources of information. The Autoimmune Registry aims to include diverse populations of people, especially people with autoimmune conditions, in clinical trials so that their findings can apply to all people equitably.   Listeners will gain valuable insights into:  The experience of living with an autoimmune condition  The significance of patient participation in autoimmune disease research.  Addressing mistrust in medical research within minority communities and the need for greater engagement in healthcare research.  The critical role of patient advocacy in improving healthcare outcomes.  Resources:  The Autoimmune Registry: The Autoimmune Registry  View the Autoimmune Registry's clinical trial opportunities: https://www.autoimmuneregistry.org/clinical-trials  NIH Office of Autoimmune Disease Research:  About the Office of Autoimmune Disease Research (OADR-ORWH) (nih.gov)    Reggie Barnes Bio:  Reggie is the Director of Patient Partnership for the Autoimmune Registry, a 501c3 nonprofit with the goal of documenting over 150 auto-immune diseases affecting 8% of people in the United States. They empower patients, facilitate research, and collaborate with other advocacy groups.   Reggie has a rare autoimmune condition called GAD65 autoimmune encephalitis, which causes debilitating inflammation in the brain and spinal cord, leading to seizures and other disabling symptoms. Those affected describe it as feeling like their brain is on fire. It affects 20,000 people in the United States and wasn't classified as a condition until 2008.  Reggie was homebound for fifteen years before finding a doctor who could diagnose his condition. This experience led him to be an active advocate with the Autoimmune Registry to improve healthcare quality and patient safety for people with autoimmune conditions.

    29 min

  4. 06/24/2024

    65. Patient Safety Stories: Empowering Patient Advocacy Part 2

    In part 2 of the podcast, Dorothy Winningham shares her journey from a patient care aide to a caregiver for family members, highlighting the need for patient preparation before medical appointments. She emphasizes the importance of patient advocacy tools and support during doctor visits. Dorothy aims to bridge the gap for patients who lack support, particularly within minority communities, to ensure they receive proper care and advocacy. She encourages listeners to reach out for more information on her advocacy efforts and toolkit.  Listeners will gain insights into:  The importance of patient involvement in healthcare decisions.  The need for improved patient-provider communication and proactive patient engagement to enhance patient safety and outcomes.  Effective patient advocacy tools and strategies, particularly for those in minority communities, to ensure proper care and support during medical appointments.  Bio: Dorothy is a passionate, patient, family, and caregiver advocate. With firsthand experience witnessing and navigating the challenges faced by those dealing with chronic and multiple health concerns, she understands the complexities of coordinating care within the medical system. After leaving Corporate America, she trained as a Personal Care Aide (PCA) for Medicare and Medicaid beneficiaries until she had to assume the role of caregiver for her brother and mother. Dorothy is acutely aware of the difficulties individuals encounter when managing chronic diagnoses and trying to navigate various doctors’ visits. She supports and advocates for individuals throughout their journey, staying well-informed of their beliefs, values, and desired health outcomes. Dorothy is Founder and CEO of WinnBeHealthy LLC.

    15 min

  5. 06/24/2024

    64. Patient Safety Stories: Empowering Patient Advocacy Part 1

    In this episode of the Patient Partner Innovation Community Podcast, host Desiree Bradley discusses patient safety with guest Dorothy Winningham, a patient advocate. Dorothy shares her brother Kirby's experience of being misdiagnosed with stage four breast cancer and the subsequent challenges. She emphasizes the importance of patient involvement in healthcare decisions, thorough documentation, and having a support system during medical appointments. Dorothy's story highlights the need for improved patient-provider communication and proactive patient engagement to enhance patient safety and outcomes.  Listeners will gain insights into:  The importance of patient involvement in healthcare decisions.  The need for improved patient-provider communication and proactive patient engagement to enhance patient safety and outcomes.  Effective patient advocacy tools and strategies, particularly for those in minority communities, to ensure proper care and support during medical appointments.  Bio: Dorothy is a passionate, patient, family, and caregiver advocate. With firsthand experience witnessing and navigating the challenges faced by those dealing with chronic and multiple health concerns, she understands the complexities of coordinating care within the medical system. After leaving Corporate America, she trained as a Personal Care Aide (PCA) for Medicare and Medicaid beneficiaries until she had to assume the role of caregiver for her brother and mother. Dorothy is acutely aware of the difficulties individuals encounter when managing chronic diagnoses and trying to navigate various doctors’ visits. She supports and advocates for individuals throughout their journey, staying well-informed of their beliefs, values, and desired health outcomes. Dorothy is Founder and CEO of WinnBeHealthy LLC.

    27 min

  6. 04/11/2024

    63. Patient Safety Stories: Risk Factors for Cardiovascular Disease in Women

    In this episode, Dr. Lyn Behnke, shares her personal journey of misdiagnosis and subsequent heart attack, highlighting the importance of self-advocacy and symptom awareness, especially in women. The conversation explores various risk factors for cardiovascular disease in women, alongside strategies for improving healthcare outcomes through effective communication and patient empowerment. Listeners will gain valuable insights into: diagnostic errors and patient safety, empowering both healthcare providers and patients with knowledge and tools to enhance healthcare experiences, and preventing delays in care. Resources: www.womenheart.org  www.inspire.com  www.facebook.com/groups/WomenHeartChampion www.facebook.com/WomenHeart.org www.facebook.com/WomenHeartNational www.linkedin.com/company/womenheart-the-national-coalition-for-women-with-heart-disease www.linkedin.com/in/celina-gorre-a92236/ www.linkedin.com/events/herheart-herhistorycelebration-7166079778695946241/comments/ Bio: Dr. Lyn Behnke, a WomenHeart Champion, has a long and varied career as a primary care provider, a critical care nurse, a family practice and a psychiatric nurse practitioner, a cardiovascular nurse practitioner, an assistant professor, and a researcher with over 50 publications and invited presentations in the past ten years.  Dr. Behnke’s passion for the appropriate diagnosis and treatment of women with heart disease began with her own challenges with heart disease and is apparent in her practice and in her presentations to funders, donors, and other women with heart disease. Her sense of humor, ability to adapt to different cultures, and belief in health equity for everyone serve to provide leadership at the board level and beyond. Her experience with SIDM, the NIH, NEMCSA, PCORI, and other patient-facing organizations helps to provide bridges between WomenHeart and partners who have joined the work of Support, Advocacy, and Education for and about heart disease in women.

    32 min

  7. 01/01/2023

    62. Help, Hope and Healing: A trusted community partner providing support to families

    Kimberly Novod is the Executive Director and Cofounder of Saul’s Light. Kimberly and her husband Aaron’s first child Saul was born at twenty-eight weeks in June 2014. Saul passed away twenty days later in the NICU at Children’s Hospital because of complications from his premature birth. The Novods established Saul’s Light in 2015 to ease the financial and emotional burden of having a child in the NICU or losing a child for other parents. The Novods are longtime Louisiana residents and are dedicated to supporting parents in New Orleans and beyond. Here’s a glimpse of what you’ll learn: Understanding the importance of building and establishing trust within communities Learn the importance of providing wrap around support to parents who are discharged with their children from the hospital Be inspired to turn your pain into purpose to serve others In this episode…. This podcast features Kimberly Novod who shares how the death of her son Saul inspired her and her husband to cofound the community-based organization Saul’s Light. She explains the needs of her community and how their organization strives to fulfill those needs. She discusses the importance of building trust in the community and aligning with other trusted partners to serve the community. She talks about how cultural factors play a major role in community outreach. You will be inspired and empowered into action.

    35 min

  8. 12/04/2022

    61. Creating an inclusive environment through partnerships, teachings and shared learning

    Hoangmai (Mai) H. Pham, MD MPH, is President and CEO of Institute for Exceptional Care, a nonprofit committed to transforming healthcare for people with intellectual and/or developmental disabilities. She is a general internist and national health policy leader. She was Vice President, Provider Alignment Solutions at Anthem, Inc., responsible for value-based care initiatives at the country’s second largest health insurance company. Prior to Anthem, Dr. Pham served as Chief Innovation Officer at the Center for Medicare and Medicaid Innovation, where she was a founding official, and the architect of Medicare’s foundational programs on accountable care organizations and primary care. She was Co-Director of Research at the Center for Studying Health System Change and has published extensively in the medical literature on provider payment policy and its intersection with health disparities, care coordination, quality performance, provider behavior, and market trends. Dr. Pham serves on numerous advisory bodies, including the National Advisory Council for the Agency on Healthcare Research and Quality, the Maryland Primary Care Program, and the National Business Group on Health, and was a member of the Board Executive Committee at the Health Care Transformation Task Force. She is an Adjunct Fellow at the Leonard Davis Institute of Health Economics of the University of Pennsylvania, and Faculty at the Institute for Healthcare Improvement. Dr. Pham earned her A.B. from Harvard University, her M.D. from Temple University, and her M.P.H. from Johns Hopkins University where she was also a Robert Wood Johnson Clinical Scholar.   Here’s a glimpse of what you’ll learn: The importance of engagement strategies to achieve an inclusive healthcare environment. Understand that meaningful engagement can promote joy in healthcare practices. Learn resources and tools available that may not have been provided in traditional medical educational programs Collaboration with patients, families and caregivers is a key component when providing patient care   In this episode…. This podcast features Hoangmai (Mai) H. Pham, MD MPH. She discusses how her organization provides training for clinicians and hospital staff around creating an environment of inclusion. IEC was founded by healthcare professionals who also have disabled loved ones. They share the anxiety and isolation of navigating an opaque, disconnected, and underfunded world of support services. Through their training and services healthcare providers can learn how to better engage with patients who have disabilities fostering an environment of inclusion.

    35 min
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Welcome to the Patient Partner Innovation Community Podcast, sponsored by ATW Health Soultions and Dr. Knitasha Washington. This podcast was created to inform patients, families and caregivers about important health transformation topics.

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