Partnering with Rare Disease Patients to Identify Meaningful Approaches to Health Technology Assessment
Alexandria, VA – June 5, 2024 – The Innovation and Value Initiative (IVI), a non-profit research organization committed to advancing the science, practice, and use of health technology assessment (HTA) in healthcare, announced a ‘call for expertise’ from June 5-21, 2024 as part of Phase II of its Rare Disease Initiative. This groundbreaking effort, aiming to enhance HTA methods to better reflect the needs and outcomes most important to rare disease patients, addresses the significant challenges in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) for rare diseases.
IVI’s initiative tackles the barriers to conducting comprehensive CER and HTA by incorporating the full spectrum of patient-centered outcomes. The initial phase utilized IVI’s “leaning laboratory” approach to produce a report with prioritized recommendations for identifying these outcomes. This next phase will see the development of a patient-centered checklist for rare disease HTA, with a strong emphasis on stakeholder engagement.
To accomplish this, IVI will:
- Gather Expert Insights: Form a multi-stakeholder advisory group to identify gaps and opportunities for patient engagement in rare disease HTA.
- Translate Insights into Tools: Create a patient engagement checklist for rare diseases based on initial phase recommendations.
- Explore Real-World Applications: Conduct key informant interviews with patients and develop 2-3 case studies demonstrating the checklist’s application in specific rare diseases.
“We are at a pivotal moment in the rare disease community,” said Rick Chapman, PhD, IVI’s Chief Science Officer. “By involving patients directly in the health technology assessment process, we ensure that their voices and unique challenges are heard and addressed. This initiative is about making real, meaningful improvements in evaluating treatments for rare diseases.”
This initiative marks a significant step forward in ensuring that the perspectives and needs of rare disease patients are integral to the healthcare decision-making process.
For more information or to apply, please click here.
This project is supported by contributions from Alexion, AstraZeneca Rare Disease.
For more information on IVI and its initiatives, visit www.thevalueinitiative.org.
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About IVI
The Innovation and Value Initiative (IVI) is a 501(c)(3) tax-exempt, non-profit research organization dedicated to advancing the science and improving the practice of health technology assessment through development of novel methods and the creation and application of enhanced health technology assessment models to support local decision-making needs in healthcare.
Contact
Smita Sanwardeker
Phone: (267) 909-7661
E-Mail: smita.sanwardeker@thevalueinitiative.org
