2025 PCORI Annual Meeting Poster “Co-Design in Practice: Lessons from Engaging People with Lived Experience in Economic Impact Research Workshops”
The poster, presented at the 2025 PCORI Annual Meeting, summarizes the development of a practical checklist to help researchers consistently and meaningfully engage patients and caregivers throughout the lifecycle of rare disease value research (including CER and HTA), ensuring patient perspectives are systematically incorporated into study design, conduct, and dissemination. VIEW POSTER
2025 ISPOR Poster “Developing a Checklist for Patient Engagement in Rare Disease Value Research”
This ISPOR poster describes the development of the Checklist for Patient Engagement in Rare Disease Value Research, created by the Center for Innovation & Value Research to help integrate meaningful patient and caregiver engagement into comparative effectiveness research and health technology assessment.
2025 World Orphan Drug Congress Poster “Developing a Checklist for Patient Engagement in Rare Disease Value Research”
This poster presents the development of the Checklist for Patient Engagement in Rare Disease Value Research, created by the Center to help researchers systematically integrate meaningful patient engagement into comparative effectiveness research and health technology assessment.
2025 NORD Breakthrough Summit Poster “Co-Creating Guidance and a Checklist for Rare Disease Value Research through Meaningful Patient and Caregiver Engagement”
This poster describes the creation of the Patient-Centered Value Research Guidance and Checklist for Rare Diseases, developed to help researchers systematically embed meaningful patient and caregiver engagement through comparative effectiveness research and health technology assessment.
2024 ISPOR Poster “Advancing Patient-Centered Outcomes Research for Rare Diseases: A Mixed-Methods Approach”
This ISPOR poster presents a mixed-methods literature review examining how patient-centered outcomes are addressed in health technology assessment and economic evaluation for rare diseases.
2024 ISPOR Poster “Engaging Patients with Rare Disease in Identifying Meaningful Approaches to integrate Patient-Centered Outcomes inComparative Effectiveness Research and Value Assessment”
This poster summarizes a mutli-stakeholder IVI-EveryLife Foundation project focused on engaging people with rare diseases to identify meaningful, patient-centered outcomes for comparative effectiveness research and value assessment.
2023 PCORI Annual Meeting Poster “Economic Impacts Framework”
This poster summarizes a PCORI-funded IVI project to develop a patient-centered framework for capturing the full range of economic impacts of illness and healthcare on patients and caregivers.
2023 AcademyHealth Annual Research Meeting (ARM) Poster “Accountability and Equity in Human Technology Assessment: Synthesis from Stakeholder Dialogue and the 4th Annual IVI Methods Summit”
The IVI Health Equity Initiative poster presented at the 2023 AcademyHealth Annual Research Meeting synthesizes findings from a multi-state, multi-stakeholder effort to define concrete actions for embedding equity into health technology assessment.