About Patient Partner Innovation Community Podcast
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.
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.
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.
17 Sept 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:
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Apple Podcasts (US)
5.0 / 5
5 ratings
Podcast Authority Score: 39 / 100
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Quality
66
Social presence
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YouTube
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Engagement
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