INBW23: What I Said at the Rare Disease Roundtable Last Week
Episode Description
What I Said at the Rare Disease Roundtable Last Week (INBW23)
Rare Disease Management Takes Stakeholder Collaboration — Here's What That Actually Requires. Episode INBW23.
Stacey Richter was recently invited to attend and present at a Rare Disease Roundtable hosted by Health Catalyst and McDermott Will & Emery in Boston, where she and a colleague from Aventria Health Group spoke about enlisting stakeholder collaboration throughout the rare disease patient journey. In this episode, she shares what she said.
WHAT YOU'LL LEARN
✅ Why the burden of staying on top of clinical developments in rare disease falls disproportionately on patients themselves
✅ Why rare disease management fundamentally requires stakeholder collaboration and coordination between points of care
✅ Why pharma is uniquely positioned to drive organizational change in rare disease — and why what pharma needs to offer is more than just a molecule
✅ Why the effort required to collaborate on rare disease treatment has to be less than or equal to the perceived reward for that collaboration to actually happen
✅ Why including clinical trial endpoints in the package insert that reflect institutional and payer needs is a concrete step forward
WHY THIS MATTERS
Rare disease patients don't have the luxury of a well-worn treatment pathway — they depend on payers willing to fund evidence-based approaches and on stakeholders willing to coordinate across traditional silos. When collaboration requires more effort than the reward it delivers, it simply doesn't happen, which is why aligning incentives across pharma, payers, and providers is the real precondition for better rare disease care.
=== LINKS ===
🔗 Show Notes with all mentioned links: Episode Page
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00:00 Introduction.
00:43 The rare disease patient journey.
02:03 The burden to stay on top of clinical developments falls on patients.
02:14 The major problem with patients tracking clinical developments in rare disease.
03:42 Stacey's personal journey with a rare disease.
06:19 These stories aren't unique; there's a hard reality around rare disease management and treatment.
06:37 "Rare disease management takes stakeholder collaboration."
07:00 "Payers … need to pay for evidence-based approaches."
08:04 Rare disease management requires coordination between points of care.
08:57 The tough ask behind improving rare disease management.
09:41 Why Pharma is primed to affect organizational change.
10:50 "It is less about an individual patient … and more about a population of patients."
11:34 The effort required to collaborate to treat rare diseases has to be less than or equal to the perceived reward.
12:06 "What Pharma needs to offer up is more than a molecule."
12:47 Account managers, go to aventriahealth.com for blog posts on helping account managers develop the skill set to create collaborative relationships.
13:28 It is best to include clinical trial endpoints in the package insert that reflect institutional and/or payer needs.
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