ISPOR 19TH ANNUAL EUROPEAN CONGRESS EXPLORES HOW HTA BODIES CAN CONSIDER THE VOICE OF PATIENTS WITH RARE DISEASES

Vienna, Austria—31 October 2016—The International Society for Pharmacoeconomics and Outcomes Research (ISPOR)  led an interesting discussion session this afternoon entitled, From Testimonials to Qualitative Research Embedded in Clinical Trials: How Do Health Technology Assessment Bodies Consider the Voice of Rare Disease Patients When Granting Access to Orphan Drugs? The discussion took place at the Society’s 19th Annual European Congress—in Vienna, Austria. 

The session was moderated by Benoit Arnould, PhD, Senior Director, Patient-Centered Outcomes, Mapi Group, Lyon, France. Speakers for the issue panel included:

  • Sheela Upadhyaya, MSc, Associate Director, Centre for Health Technology Evaluation, Highly Specialised Technologies, National Institute for Health and Care Excellence, London, UK
  • Samantha Parker, MBA, Senior Vice President, Patient Access Officer, Lysogene, Neuilly sur Seine, France

This session focused on issues surrounding market authorization for orphan drugs and the current gap in the way information from patients is provided to authorities. Panelists representing a variety of health care stakeholders examined how patient testimonials can impact HTA decisions, the degree to which this is sufficient to support reliable decision making, and how qualitative research could help strengthen in the way this information is provided to authorities. Speakers noted that patients and their representatives play an essential role in sharing their experiences of orphan drugs in terms of priorities, risk/benefit assessment, and meaningfulness of outcomes.

Additional information on the ISPOR 19th Annual European Congress can be found here. Released presentations from the congress can be found here. Interested parties can follow news and developments from the conference on social media using the hashtag #ISPORVienna.

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