Advertise on podcast: Patient Partner Innovation Community Podcast

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.

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. 

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. 

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.

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.

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.

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.

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.

Dr. Chantell Frazier is the CEO and Founder of Anansi, LLC. Anansi is a boutique data and research strategy consulting firm focused on improving black mental health and mental health in other communities of color. She is a thought leader, researcher, and strategist. She loves research but believes in doing studies that make an impact and matters. She focuses on metrics, research design, data strategy and policy insights that will lead to real opportunities in mental health for black and brown communities. Interested in learning more about her organization at [email protected]. Here’s a glimpse of what you’ll learn: Understanding what tools and resources are needed to improve mental health outcomes for patients and families of color. Learn how story telling partnered with data can drive change in healthcare systems. Understand how COVID has exasperated mental health issues in our communities Build a more solution-based way of thinking to address the SDOH factors that affect mental wellness in black and brown communities The impact of bringing in diverse voices into the work of research and quality improvement In this episode…. This week’s podcast features Dr. Chantell Frazier.  She discusses how the importance of utilizing data to drive change in the black and brown communities. She identifies the gap in data collection and research in communities of color. Dr. Frazier explains how story telling can complement data to improve health outcomes. She was empowered to create her organization Anansi, LLC. Anansi is focused on improving mental health in communities of color. She will leave you inspired into action.

Dr. Washington is a prominent figure in healthcare transformation serving in the capacity of thought-leader, advocate, researcher and performance improvement expert who has worked with healthcare systems, U.S. government agencies and numerous policymaker groups to ensure that patient-centered and equitable approaches are at the heart of healthcare redesign. Dr. Washington founded and serves as President & CEO of ATW Health Solutions, a management consulting and research firm based in Chicago and board member for National Quality Forum (Washington DC). Shaped by her passion and belief in social justice, Knitasha has earned recognition nationally for her work in quality improvement, patient and family engagement, health equity and patient safety. Here’s a glimpse of what you’ll learn: Hear about the latest innovative trends in person and family engagement Understanding how research findings tell the story of past successes in patient safety outcomes Lessons learned and best practices in stakeholder engagement The importance of accountability to sustain meaningful PFE In this episode…. Dr. Knitasha Washington discusses the current state of person, family, and stakeholder engagement. She elevates the innovation and impact of patient safety research and outcomes. The importance of elevating diverse and underrepresented community partners such as Indigenous Lifeways to drive change is discussed. You will be inspired and empowered into action.

This podcast episode features guest Darius Bradley. He will share his journey of navigating the healthcare system as a father of color. He will also share his experiences of often being ignored. He was inspired to create a support group for fathers who are caring for medically complex children “Pappas and Pizzas" while in the hospital. Here’s a glimpse of what you’ll learn: Ensure you are providing an inclusive environment when discussing care plans with fathers Understanding how implicit biases affect black fathers’ healthcare experience when engaging care teams How to provide programs to support fathers whose loved ones are inpatient Learn more about the “Pappas and Pizzas” model   Bio: Darius N. Bradley Sr. resides in the Houston, TX metropolitan area but was born and raised in New Orleans La. He is a loving husband and proud father of three. He is a passionate Encourager speaker and an Amazon multi best-selling author. Darius is the CEO and co-owner of Full Ability Clothing, an organization advocating for our differently abled community. He has served his gift of “Go Get !t” encouragement within the public schools in the Houston metropolitan area. Darius prides himself on empowering at risk youth. He has provided team building activities for national corporations such as Costco’s, Walmart, Panda Express and many others. He has provided motivational coaching services for Semi-pro football leagues, local organizations, hospitals and more. He does daily motivational videos on all his social media platforms in addition to composing, editing and doing voiceovers. He provides daily life coaching support for many community members, family, and friends.  

Michelle Whitman and MaryLiz McNamara believe that disability is an asset. They are on a mission to build sustainably inclusive practices and experiences for all.  In this episode…… We discuss the topic of inclusion and access for people living with disabilities with experts Michelle Whitman and MaryLiz McNamara. Did you know that there are approximately 1 in 4 people live with a disability and more than 50% of people in the U.S. either identify as a person with a disability or are closely connected to someone who does? Michelle and MaryLiz work to disrupt the mindset around disability, resulting in authentically developed, sustainable processes that are accessible and inclusive by design. Here’s a glimpse of what you will learn: Broaden your thinking about disability inclusion and access beyond compliance with regulation. Identify your assumptions about people with disabilities and how they cause barriers to inclusion. Be planful about disability inclusion from the beginning – be proactive versus reactive. Michelle Witman (she/hers) Michelle has over 20 years of experience working with individuals with disabilities in educational and corporate settings. Michelle’s passion for helping individuals see their weaknesses as a strength has paved the way for her success. She is the co-founder of Asset Based Consulting, Inc. Mary Liz McNamara (she/hers) Mary Liz has decades of experience working on disability inclusion in education and employment. She has worked in cognitive rehabilitation for people with brain injuries, academic coaching, in career counseling for the Division of Vocational Rehabilitation, and has led an accessibility office for a major university. She designed and led an award-winning program for neurodiverse university students which resulted in significant increases in degree completion and successful employment. She is the co-founder of Asset Based Consulting, Inc. Contact Michelle or MaryLiz or connect with them through social media: [email protected]   [email protected] LinkedIn: https://www.linkedin.com/company/asset-based-consulting/ https://www.linkedin.com/in/michelle-witman/ https://www.linkedin.com/in/mary-liz-mcnamara-090b308/ Facebook or Instagram: Asset Based Consulting www.AssetBasedConsulting.com

Kevin Wake is currently the chairman for University Health’s Patient & Family Advisory Committee.  He is also the President of the Uriel E. Owens Sickle Cell Disease Association of the Midwest in Kansas City, KS. He 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 SCDAA.  Here’s a glimpse of what you will learn: How a patient’s story and lived experience has the power to drive change in the healthcare ecosystem The different levels of patient engagement and how a patient can be empowered to partner with their healthcare environment. The importance and strategies to ensure health systems provide an environment for meaningful patient engagement   In this episode…. Kevin Wake shares his journey from patient to patient advocate. You will hear how he began to engage with his local Sickle Cell organization and quickly became a national champion. His story will inspire you into action. He also explains how to provide a welcoming environment where patients and providers can come together collaboratively to drive change in your healthcare ecosystem.

Ashley is an African American female who resides in Quinter, KS. She has become a national and local patient advocate and champion. She has been instrumental in her community to assist and elevate marginalized voices. She was inspired to become an advocate in her local school system from her experiences with her two sons who have autism. Through her advocacy she has become a true partner in her community to inform and advocate for persons with a disability. She has served on many national and local healthcare quality improvement projects. She is a champion for equity and hopes to inspire others to follow her lead. She believes in family centered care and shared decision making. Here’s a glimpse of what you will learn: What is meaningful engagement through the patient lens How to provide a culture where every voice is an equal stakeholder Why compensation is an important factor to achieve equitable engagement In this episode…. This podcast episode features patient partner Ashley Bates-Crowley. She shares her perspective of what meaningful patient engagement and equity looks like. She has been empowered to promote engagement and mentorship in her community. You will be inspired to become a health equity champion. The true meaning of equity in healthcare quality improvement will be highlighted and how to move in the spirit of collaboration.

Ajshay James, MBA, is a Mediator, Motivator, Author, Advocate and Mother. She is originally from Washington, DC and is a champion for change---change in the way the world views philanthropy and approaches advocacy for vulnerable populations. Her years of experience of executive leadership in the philanthropic and financial sectors make her a powerhouse--that coupled with a heart the size of Texas is a recipe for a world of good. She has served on numerous committees, boards of directors, founded not-for-profits, launched initiatives and advised general corporations on goodwill strategy. Her most proud role is that of a mother to her former micro-preemie toddler daughter and unicorn lover, Harper. Ajshay’s NICU and premature birthing experience has made her a strong advocate for preemie and patient rights as CEO and Founder of the Harp Foundation. Committed to health equity, Ajshay is a sought-after speaker and practices servant leadership. Currently, Ajshay is pursuing the development of a patient, caregiver, and inter-agency focused software that will offer risk management and response support to responding care partners in the healthcare field.  Here’s a glimpse of what you’ll learn: Ajshay James’ experience in the Neonatal Intensive Care Unit (NICU) Resources that the Harp Foundation offers to parents in the NICU experience Ajshay’s advocacy work in partnership with Yale CORE on maternal health disparities The key role of community partners as drivers for measures development Resources Mentioned in this Episode: Harp Foundation March of Dimes Yale CORE