S4-E20.3 - Generating and Promoting the Data to Demonstrate Patient Needs

Send us Fan MailDonna Cryer joins Jörn Schattenberg, Louise Campbell and Roger Green for an impactful episode which weighs the complexities of competing needs across all Fatty Liver stakeholders. The session expands discourse on the recently discussed ICER draft report to consider a developing landscape around nomenclature consensus and other important and impending decisions. Critically, the group grapples with challenges associated with honoring the precedence of patient-centricity.Roger begins this conversation by pointing to Jörn’s diversifying role in the NASH community. Specifically, Jörn is prompted to elaborate on his unique perspective in regards to what sort of forward thinking is required in getting “questions asked in a different way.” Jörn first reminds that nomenclature consensus is an ongoing process that has yet to yield a definitive conclusion. More broadly, he goes on to underscore the importance of promoting awareness, education and advocacy around the real impact of Fatty Liver disease on patients and wider communities.From here the group considers how the nomenclature debate emerged and what cultural and systemic differences may be impacted by a decision going forward. In example, Roger notes that in some countries the word nonalcoholic is useful in that it lifts stigma. The panelists also note the nuances and challenges nomenclature poses to the pediatric population. As the session winds down, Roger states that when dealing with a multi-stakeholder world, you need to start with a truly diffuse, multi-stakeholder solution. Finally, Donna closes with a quote from The Color Purple: “I shouldn't have to fight in my own house. And that's how I feel like as a patient in the NASH community right now.”Listen to the full feature to engage with these impactful moments. If you enjoy the episode, have questions or interest around endocrinology and Fatty Liver disease, we kindly ask that you submit reviews wherever you download the discourse. Alternatively, you can write to us directly at [email protected] Safe and Surf On!