Ep 49: Melanoma Patient Network Europe with Bettina Ryll
10/14/24 • 39 min
1 Listener
Summary
In this episode of Melanoma Matters, hosts James Larkin and Sapna Patel engage with Bettina Ryll, founder of the Melanoma Patient Network Europe (MPNE). Bettina shares her personal journey from being a physician to becoming a patient advocate after her husband's battle with metastatic melanoma. The conversation explores the evolution of patient support networks, the challenges faced in healthcare systems, and complex adaptive systems. Bettina emphasizes the need for systemic change to improve patient access to treatments and highlights the importance of understanding the interconnectedness of healthcare, economics, and patient outcomes.
Keywords
melanoma, patient advocacy, healthcare systems, immunotherapy, patient networks, Bettina Ryll, MPNE, clinical trials, healthcare access, systemic change
Takeaways
Bettina Ryll founded MPNE after her husband's battle with melanoma.
Patient networks are crucial for sharing knowledge and support.
Understanding the healthcare system is key to advocating for patients.
Immunotherapy presents complex challenges that need addressing.
Systemic change is necessary for improving patient access to treatments.
The pharmaceutical landscape is influenced by economic factors.
Patients should not be treated as victims of their circumstances.
Action is often more effective than extensive planning.
Collaboration and community (and ferocious energy) are essential for driving change.
Sound Bites
"I just started explaining science."
"We are sentinels for issues."
"We must be standing for something."
Chapters
00:00 Introduction to Bettina Ryll
06:19 The Formation of Melanoma Patient Network Europe
11:51 Understanding Patient Needs and Systemic Issues
17:54 Challenges in Immunotherapy and Clinical Trials
23:47 Healthcare and Patient Access as Complex Adaptive Systems
29:25 The Role of Community and Collaboration in Change
Summary
In this episode of Melanoma Matters, hosts James Larkin and Sapna Patel engage with Bettina Ryll, founder of the Melanoma Patient Network Europe (MPNE). Bettina shares her personal journey from being a physician to becoming a patient advocate after her husband's battle with metastatic melanoma. The conversation explores the evolution of patient support networks, the challenges faced in healthcare systems, and complex adaptive systems. Bettina emphasizes the need for systemic change to improve patient access to treatments and highlights the importance of understanding the interconnectedness of healthcare, economics, and patient outcomes.
Keywords
melanoma, patient advocacy, healthcare systems, immunotherapy, patient networks, Bettina Ryll, MPNE, clinical trials, healthcare access, systemic change
Takeaways
Bettina Ryll founded MPNE after her husband's battle with melanoma.
Patient networks are crucial for sharing knowledge and support.
Understanding the healthcare system is key to advocating for patients.
Immunotherapy presents complex challenges that need addressing.
Systemic change is necessary for improving patient access to treatments.
The pharmaceutical landscape is influenced by economic factors.
Patients should not be treated as victims of their circumstances.
Action is often more effective than extensive planning.
Collaboration and community (and ferocious energy) are essential for driving change.
Sound Bites
"I just started explaining science."
"We are sentinels for issues."
"We must be standing for something."
Chapters
00:00 Introduction to Bettina Ryll
06:19 The Formation of Melanoma Patient Network Europe
11:51 Understanding Patient Needs and Systemic Issues
17:54 Challenges in Immunotherapy and Clinical Trials
23:47 Healthcare and Patient Access as Complex Adaptive Systems
29:25 The Role of Community and Collaboration in Change
Previous Episode
Ep 48: CM 067 Final, 10-year analysis with Jedd Wolchok
SummaryIn this episode of Melanoma Matters, hosts James Larkin and Sapna Patel engage with Jedd Wolchok, a prominent figure in oncology, to discuss his journey into the field, the evolution of immunotherapy, particularly the Checkmate-067 trial, and the long-term outcomes for melanoma patients. The conversation highlights the importance of collaboration in clinical trials, the significance of understanding treatment decisions, and the future of melanoma treatment with a focus on biomarkers and patient follow-up. The discussion also reflects on the profound impact of Checkmate-067 on patient care and the oncology community.Keywordsmelanoma, immunotherapy, Checkmate-067, oncology, patient outcomes, long-term follow-up, biomarkers, cancer treatment, clinical trials, survivorshipTakeawaysJedd Wolchok's journey into oncology was influenced by family experiences with cancer.The Checkmate-067 trial was a pivotal moment in melanoma treatment.Collaboration among researchers is crucial for successful clinical trials.Long-term follow-up data from Checkmate-067 shows promising outcomes for patients.Understanding residual abnormalities in imaging is essential for treatment decisions.The need for biomarkers to assess immune system activation is critical.Patient follow-up strategies should be tailored to individual needs.The impact of Checkmate-067 extends beyond melanoma to other cancers.The evolution of immunotherapy has changed the landscape of cancer treatment.Mentorship and collaboration are key to advancing oncology research.TitlesReflections on a Career in OncologyThe Impact of Checkmate-067 on OncologySound Bites"This is something that we need to be doing.""We need to incorporate the symptomatic meaning.""Not every residual area of abnormality is cancer."Chapters00:00 Introduction to Melanoma Matters and Guest Background03:25 Journey into Oncology and Early Influences06:26 The Evolution of Immunotherapy: Checkmate-06709:14 The Significance of Phase One Trials12:25 Long-term Outcomes and Implications of Checkmate-06715:09 Understanding Treatment Responses and Patient Management18:06 The Future of Oncology: Biomarkers and Precision Medicine21:19 Survivorship and Patient Follow-up Strategies24:21 Reflections on the Impact of Checkmate-06727:24 Closing Thoughts and Acknowledgments
Next Episode
Ep 50: ADAPT-IT Study
Summary
Gulf oysters and FATE get a shoutout in this episode of Melanoma Matters. Hosts James Larkin and Sapna Patel discuss the ADAPT-IT study, focusing on adaptive dosing strategies in immunotherapy for melanoma. They explore the study's design, results, and implications for clinical practice, including the potential for reduced dosing based on early response assessments.
Keywords
ADAPT-IT study, immunotherapy, melanoma, adaptive dosing, clinical efficacy, treatment response, toxicity management, cancer research
Takeaways
The ADAPT-IT study explores adaptive dosing in immunotherapy.
68% of patients showed favorable anti-tumor effects after two doses.
Early response assessments can guide treatment decisions.
The study suggests that two doses may be sufficient for some patients.
There is potential for one dose to be effective in certain cases.
Reimbursement policies may influence treatment strategies.
Correlative studies provide insights into treatment efficacy.
Management of toxicity is crucial in immunotherapy.
The conversation highlights the importance of clinical intuition.
Future research may refine dosing strategies further.
Sound Bites
"Is two cycles enough?"
"68% had a favorable anti-tumor effect."
"Could one dose be enough?"
Chapters
00:00 Introduction to the ADAPT-IT Study
04:12 FATE v non-FATE
06:03 Clinical Implications of Early Response Assessment
09:02 Results and Efficacy of the Study
11:50 Discussion
14:18 Exploring the Role of LDH in Treatment Decisions
17:32 Correlative Studies and Future Directions
20:14 Toxicity and Management Strategies
22:58 Correlatives (ctDNA)
30:54 Bit of good news about NADINA
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