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 #6: Beyond Productivity: Capturing Long-Term Educational and Job Impacts
Serious health conditions can disrupt not only the short-term work and productivity of patients and caregivers but also their long-term education, employment, and financial stability. While traditional economic analyses often focus on near-term productivity losses, much less is known about the lasting ripple effects of chronic conditions, acute health events, and caregiving responsibilities.
This workshop, part six in the Center’s Patient-Centered Economic Impacts Project, will explore how comparative effectiveness and health economics research can better capture these long-term impacts. By elevating lived experience and examining both losses and gains over a lifetime, this discussion will surface actionable research questions and methods to reflect the full value of health interventions.
Objectives:
- Center lived experiences on how illness and caregiving affect long-term education and work.
- Translate existing evidence into new, patient-centered research priorities.
- Identify ways to connect treatment access with sustained economic and educational benefits.
Key Questions:
- How do chronic or serious health conditions disrupt educational attainment and career advancement?
- What lifetime earnings or learning opportunities are affected by illness or caregiving responsibilities?
- How can researchers measure and integrate long-term employment and educational outcomes into value assessment and policy?
Register now to join this interactive discussion and help shape patient-centered research and policy that reflect the full cost of healthcare.
Date: Thursday, December 11, 2025
Time: 1:00 PM – 3:00 PM EST
Format: Virtual
Facilitated by the Center staff with presentations by:
- Patrick Brady, MD, MSc (Cincinnati Children’s Hospital Medical Center)
- Shireen Hayatghaibi, PhD (Cincinnati Children’s Hospital Medical Center)
- Darcel Jackson (Children’s National Hospital)
Please contact ushma.patel@valueresearch.org if you have any questions.
Past Workshops
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 hosted its fourth virtual workshop in our ongoing Patient-Centered Economic Impacts project. This session examined the significant yet often overlooked economic burden faced by patients, caregivers, and families due to delays in receiving a diagnosis.
Key discussion topics included:
- 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 was part of a six-part series designed to center patient experience in the analysis of economic burdens in healthcare. Participants included 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.
Workshop #5: Quantifying the Cost of Stress for Patients and Caregivers
The Center for Innovation & Value Research invites you to join the fifth virtual workshop in our ongoing Patient-Centered Economic Impacts project. This session will explore the financial toll and stress that patients and caregivers face when navigating complex and chronic health conditions. Stress has real economic consequences, impacting individuals, families, and healthcare systems, yet it remains unmeasured, mainly in research and decision-making. Join us to learn how future studies can better capture these impacts and help inform more equitable healthcare solutions.
Key discussion topics include:
- The types of stress most reported by patients and caregivers
- How these stresses create measurable economic burdens
- Approaches researchers can use to capture these impacts in future studies
Register now to join this interactive discussion and help shape patient-centered research and policy that reflects the full cost of healthcare.
Date: Thursday, September 25, 2025
Time: 11:00 AM – 1:00 PM ET
Format: Virtual
Facilitated by the Center staff with presentations by:
- Claudia Chahin, JD (Patient Advocate)
- Rachel Gilgoff, MD (Adjunct Clinical Associate Professor at Stanford University School of Medicine)
Please contact ushma.patel@valueresearch.org if you have any questions.