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Effectively articulating burden for future health technology assessments
Written on Wednesday, March 16, 2022
As the uptake of personalized medicine and advanced therapies has increased, so has the pressure on healthcare budgets. To enable informed decisions on the long-term value that new therapies may provide to people living with rare disease, it is critical to convey a comprehensive picture of burden and do so in a way that resonates with decision makers.
In this webinar, we will look at:
- Why burden is so important in value assessment
- How to address all facets of burden
- How to recognize and overcome the disability paradox
- How to collect data on burden and articulate it effectively
- Why collaboration between patient communities and Pharma is so important
- How patient representatives should prepare to contribute to HTAs for patient access and reimbursement
Speakers:
Roanna Maharaj – Patient advocate and thalassemia community representative
Sheela Upadhyaya – Rare disease expert
Ella Balasa – Patient advocate, speaker, published writer, and health engagement consultant
Josie Godfrey – Director, JG Zebra Consulting, and Co-Founder, Realise Advocacy
Rosemary Jose – Senior Director, Strategic Market Access, OPEN Health Evidence and Access
Karen Bailey – Associate Director, Patient-Centered Outcomes, OPEN Health Evidence and Access
Gavin Jones – Global Advisor, Rare Disease, OPEN Health
As the uptake of personalized medicine and advanced therapies has increased, so has the pressure on healthcare budgets. To enable informed decisions on the long-term value that new therapies may provide to people living with rare disease, it is critical to convey a comprehensive picture of burden and do so in a way that resonates with decision makers.
In this webinar, we looked at:
- Why burden is so important in value assessment
- How to address all facets of burden
- How to recognize and overcome the disability paradox
- How to collect data on burden and articulate it effectively
- Why collaboration between patient communities and Pharma is so important
- How patient representatives should prepare to contribute to HTAs for patient access and reimbursement
Panelists:
Roanna Maharaj – Patient advocate and Thalassemia community representative
Ella Balasa – Patient Advocate, speaker, published writer, and health engagement consultant
Sheela Upadhyaya – Rare Disease Expert
Josie Godfrey – Director, JG Zebra Consulting and Co-Founder Realise Advocacy
Karen Bailey – Associate Director, Patient Centered Outcomes, OPEN Health Evidence and Access
Rosemary Jose – Senior Director, Strategic Market Access, OPEN Health Evidence and Access
Chair:
Gavin Jones – Global Advisor, Rare Disease, OPEN Health