Interactive Workshop Series
The Patient-Centered Economic Impacts (PCEI) interactive workshop series is open to those interested in making health research more patient-centered, particularly patients, caregivers, researchers, payers, industry experts, research sponsors, and other stakeholders. In 2024-2025, the Center will host a series of free 2-hour workshops held via Zoom. Each workshop will focus on a specific topic featuring expert faculty.
Workshop #1: Journey Mapping Patient-Centered Economic Impacts for Research
The first workshop in our series focused on the use of patient journey maps as a tool to integrate Patient-Centered Economic Impacts (PCEI) into research. The workshop was facilitated by Center staff with presentations from Elisabeth M. Oehrlein, PhD, MS, Founder and CEO of Applied Patient Experience, LLC and Jae Samuel, patient advocate.
Over 50 attendees representing researchers, patients, patient advocates, caregivers, funders, and industry, gathered to:
- Identify respectful empowering ways to ask about and include economic impacts when mapping patient journeys.
- Explore elements of the PCEI framework most important to include in patient journey maps.
- Discover how patient journey maps can inform research design, interpretation, and limitations.
- Elisabeth M. Oehrlein, PhD, MS (Founder and CEO, Applied Patient Experience, LLC
- Jae Samuel (Patient Advocate)
Please contact ushma.patel@valueresearch.org if you have any questions.
Workshop #2: Time is Money: Capturing Time Effects of Economic Impacts
The second workshop focused on the often-overlooked time costs experienced by patients and caregivers, including delayed treatment, lost income, and missed educational opportunities. By focusing on the entire patient journey, researchers and funders can improve trust and partnerships with patient communities and gain a deeper understanding of healthcare’s true costs. Participants learned how a more holistic approach—one that considers the entire patient journey—can build stronger partnerships, enhance trust, and reshape future funding priorities. The findings from this discussion will guide more inclusive and impactful research practices, ensuring a fuller understanding of healthcare’s true economic impact.
Key questions addressed in this workshop include:
- What economic impacts are most felt as time costs by patients and caregivers?
- What aspects of time are most important to measure?
- How do these time costs differ across various ages, demographics, and socioeconomic backgrounds?
Facilitated by the Center staff with presentations by:
- Tina Aswani-Omprakash, MPH (President and Co-Founder, South Asian IBD Alliance)
- Beth Gore (CEO, Oley Foundation)
- Casey Quinn
Please contact ushma.patel@valueresearch.org if you have any questions.
Workshop #3: The Economic Realities of Caregiving
The third workshop explored caregiving’s economic challenges and their impact on patients, families, and the broader healthcare system. This interactive workshop provided actionable insights for researchers, advocates, funders, and policymakers.
Key discussion topics included:
- What are the most critical economic impacts on caregivers?
- How do these impacts differ across various patient and caregiver contexts?
- What gaps exist in current research and how can we address them?
Facilitated by the Center staff with presentations by:
- Geri Baumblatt, MA (Articulations Consulting, Principal Caregiver, Advocate)
- Tara Lavelle, PhD (Assistant Professor, CEVR, Tufts Medical Center)
- Christine Freund, CSW (Caregiver Advocate)
- Dorothy Winningham (Patient, Family, and Caregiver Advocate)
Please contact ushma.patel@valueresearch.org if you have any questions.
Workshop #4: Incorporating Patient Costs into Research on Diagnostic Delays
The Center for Innovation & Value Research invites you to join the fourth virtual workshop in our ongoing Patient-Centered Economic Impacts project. This session will examine the significant yet often overlooked economic burden faced by patients, caregivers, and families due to delays in receiving a diagnosis.
Key discussion topics include:
- Personal and economic impacts of diagnostic delays
- Current research findings and methods
- How to better identify, measure, and address these costs in health systems
This workshop is part of a six-part series designed to center patient experience in the analysis of economic burdens in healthcare. We welcome participation from researchers, patient advocates, policymakers, funders, and healthcare professionals.
Date:
Wednesday, June 4, 2025
Time: 1:00 PM – 3:00 PM EDT
Format: Virtual
Facilitated by the Center staff with presentations by:
- Annie Kennedy (Chief of Policy, Advocacy, and Patient Engagement, EveryLife Foundation for Rare Diseases)
- Brian Dawson (M.L.I.S., Patient Advocate)
Please contact ushma.patel@valueresearch.org if you have any questions.