Impacts of Patient-Centered Collaboration: Application of a Continuous Engagement Plan Across Multiple Phases of the Insights and Patient Experiences With Cardiovascular Disease (IPEC) Initiative
Author(s)
Joe Vandigo, MBA, PhD1, Elisabeth Oehrlein, MS, PhD1, David Kelly, 2, Karen Padilla, 2, Brianne Donaldson, 1, Neil Johnson, 2.
1Applied Patient Experience, LLC, Washington, DC, USA, 2Global Heart Hub, Galway, Ireland.
1Applied Patient Experience, LLC, Washington, DC, USA, 2Global Heart Hub, Galway, Ireland.
OBJECTIVES: As health systems face rising costs, evolving regulations, and rapid innovation, embedding patient-centered approaches in value and access decisions requires stronger partnerships across the healthcare ecosystem. This abstract describes a real-world model for operationalizing such collaboration through Insights and Patient Experiences with Cardiovascular Disease (IPEC), a patient-led initiative launched by the Global Heart Hub (GHH). The abstract explores how the IPEC model integrates diverse stakeholder input to shape methods, interpretation, and dissemination, which is directly relevant to ISPOR stakeholders working to embed patient-centered approaches in outcomes research.
METHODS: In Phase 1, GHH engaged patient advocate country leads in Australia, Brazil, and the United States alongside a multi-stakeholder Steering Committee. In Phase 2, the initiative expands to eight countries, with three engagement structures:
Steering Committee: Guides overall direction. Responsibilities include refining objectives, shaping protocol components (eligibility, instruments), reviewing progress, interpreting findings, and supporting dissemination.
Review Committee: Consulted at key points. Provides written input on methods, joins an end-of-study listening session, and may contribute to abstracts or publications.
Women & Heart Working Group: A patient-advocate advisory board serving as a sounding board throughout the project.
RESULTS: Phase 1 engagement shaped the research question, study population, and eligibility criteria. Conference presentations and policy discussions about the results were led by GHH or Steering Committee members. In Phase 2, the Women & Heart Working Group influenced data collection tools, introducing a life-journey framing rooted in lived experience. Country-level advisors ensured local context remained central.
CONCLUSIONS: IPEC offers a replicable approach to advancing equitable and meaningful patient involvement in research. Through structured collaboration with diverse, regional stakeholders, the initiative enhances the value and relevance of patient-generated data, aligning with ISPOR’s commitment to powering access through patient-centered collaboration.
METHODS: In Phase 1, GHH engaged patient advocate country leads in Australia, Brazil, and the United States alongside a multi-stakeholder Steering Committee. In Phase 2, the initiative expands to eight countries, with three engagement structures:
Steering Committee: Guides overall direction. Responsibilities include refining objectives, shaping protocol components (eligibility, instruments), reviewing progress, interpreting findings, and supporting dissemination.
Review Committee: Consulted at key points. Provides written input on methods, joins an end-of-study listening session, and may contribute to abstracts or publications.
Women & Heart Working Group: A patient-advocate advisory board serving as a sounding board throughout the project.
RESULTS: Phase 1 engagement shaped the research question, study population, and eligibility criteria. Conference presentations and policy discussions about the results were led by GHH or Steering Committee members. In Phase 2, the Women & Heart Working Group influenced data collection tools, introducing a life-journey framing rooted in lived experience. Country-level advisors ensured local context remained central.
CONCLUSIONS: IPEC offers a replicable approach to advancing equitable and meaningful patient involvement in research. Through structured collaboration with diverse, regional stakeholders, the initiative enhances the value and relevance of patient-generated data, aligning with ISPOR’s commitment to powering access through patient-centered collaboration.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR134
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement
Disease
Cardiovascular Disorders (including MI, Stroke, Circulatory)