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: 

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: 

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: 

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: 

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: 

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: 

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:

Resources:

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:

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.

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:

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:

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:

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.