Mapping Health Care's Hidden Financial Burdens

In February, the Census Bureau released data showing the totality of medical debt for adults and households in the US for 2021. Findings from the Survey of Income and Program Participation demonstrate medical debt is a primary financial constraint for 20 million adults, who report unpaid medical bills of more than $250 as of December 2021. Breaking this down shows 14 million of that group owe more than $1000 and 3 million owe more than $10,000. Collectively, the total medical debt was $220 billion for 2021.¹

A new report from the Center for Innovation & Value Research paints a more detailed picture of the patient-centered economic impacts of health care, taking into account that the debt incurred from a patient’s medical care affects not only them, but their families and caregivers, too,² with CEO Jason Spangler noting these costs “go beyond the obvious medical bills” to include navigating the health care system³ and include “copayments, transportation costs, job impacts, and caregiver burden.”⁴

The report, “Uncovering the True Cost of Healthcare: Patient Journey Mapping to Inform Economic Impacts,” is the second step of the Patient-Centered Economic Impacts Project⁵—the first step being the research framework outlined in a 2023 report from the Innovation and Value Initiative (now known as the Center for Innovation & Value Research) and AcademyHealth⁶—and it covers final results from the first workshop of a total 6 meant to comprehensively examine the scope of the economic impact of a health care system journey on patients and caregivers.²

This research represents findings from the first of 6 workshops from the Center for Innovation & Value Research meant to comprehensively map the patient journey and the economic impact that extends byond patients, to their families and carefgivers. | Image Credit: © Center for Innovation & Value Research

Patient Journey Mapping

Patients, caregivers, researchers, and others (N = 54) attended the July 18 workshop that encompassed “mapping out what patients and their families experience as they get health care.” According to the report, a journey map is meant to show gaps in health care and social services and show costs missed by researchers, patients, and health care providers, with the goals to highlight where greater financial navigation assistance is needed and how to optimize health care delivery and treatment by streamlining processes. The focus can be narrow or broad, and it should be grounded in lived experience.

A core tenet of the workshop was the guiding principle of understanding the whole-person patient journey, and it kicked off with a discussion between a patient, Jae Samuel, and a researcher, Elisabeth Oehrlein, PhD, MS, founder of Applied Patient Experience, LLC, with Jae highlighting added pressures from unexpected economic roadblocks. In addition to his health care and the family’s everyday costs, his wife was laid off while he was battling multiple myeloma; he experienced a crises cluster (no car, which meant paying for public transportation, which itself added to the economic stress from having to get by on his disability insurance); and there were no mental health services that could have supported him and his family during this time—services that also come with high out-of-pocket costs.

The report notes that within patient-centered research, mapping can also be useful toward gaining a greater understanding of the natural history of the disease, identifying patient comparators (eg, different treatment options and their financial effects), and selecting outcomes to measure. Further, it can facilitate shifting the traditional perspective of journey mapping from health systems and payers to the patients and their caregivers and families, aggregate data, and bring much-needed attention to how complex the health care journey is for individuals living with serious health conditions.

Steps and Key Considerations When Mapping the Patient Experience

The report explains that although the focus of journey mapping can be narrow or broad, there is a more defined stepwise framework that works to best uncover the economic impacts. These steps are:

• Clearly define the objective
• Determine data sources and methods
• Develop an analysis plan to map stages across patient experiences
• Draft the patient experience map
• Disseminate and use the patient experience map

Further, key considerations that should always remain top of mind are to do the following:

• Build trust with those who have the lived experiences that are being mapped and to remain transparent with communications about the research’s purpose, present, and respectful
• Uncover hidden costs by paying close attention for potential cues that indicate hidden financial burdens, such as housing insecurity
• Explore for potential ripple effects of patients’ financial burdens
• Gain system insights by remembering these journeys are incredibly complex and the knowledge gained can benefit future policy initiatives that target improved patient-centered resources
• Leverage the experience maps for impact by sharing them with stakeholders, policy makers, and the public to advance advocacy and drive meaningful change

Next Steps: Workshop 2

The second of the 6 workshops, “Time is Money: Capturing Time Effects of Economic Impacts,” will take place on November 14, and among other goals will attempt to answer 3 key questions⁷:

• 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?

The 3 featured speakers are Tina Aswani-Omprakash, MPH, president and cofounder, South Asian IBD Alliance; Beth Gore, CEO, Oley Foundation; and Casey Quinn, PhD, senior advisor, Patient-Centered Outcomes Research Institute.⁸

For More Information

Please stay tuned to this page for additional details on the remaining 4 interactive workshops.

References

1. Rakshit S, Rae M, Claxton G, Amin K, Cox C. The burden of medical debt in the United States. Peterson-KFF Health System Tracker. February 12, 2024. Accessed November 4, 2024. https://www.healthsystemtracker.org/brief/the-burden-of-medical-debt-in-the-united-states/#Share%20of%20adults%20who%20have%20medical%20debt,%20by%20state,%202019-2021

2. Uncovering the true cost of healthcare: patient journey mapping to inform economic: impacts workshop #1 learning report. Center for Innovation & Value Research. October 2024. Accessed November 4, 2024. https://valueresearch.org/wp-content/uploads/2024/10/Uncovering-the-True-Cost-of-Healthcare-Workshop-Learning-Report-1_FINAL.pdf

3. The Center announces release of patient-centered economic impacts learning report. News release. Center for Innovation & Value Research. October 17, 2024. Accessed November 4, 2024. https://valueresearch.org/press-release-the-center-announces-release-of-patient-centered-economic-impacts-learning-report/

4. McCool K. IVI launches new project addressing patient-centered economic impacts in health care. Becaris Publishing. May 14, 2024. Accessed November 4, 2024. https://becarispublishing.com/digital-content/blog-post/ivi-launches-new-project-addressing-patient-centered-economic-impacts-health-care#:~:text=The%20Innovation%20and%20Value%20Initiative,recommendations%20as%20the%20project%20progresses

5. Patient-Centered Economic Impacts Project. Center for Innovation & Value Research. Accessed November 4, 2024. https://valueresearch.org/what-we-do/defining-solutions/economic-impact/

6. Malik E, Bright J, Cope E, Edmnuds M. A research framework to understand the full range of economic impacts on patients and caregivers. Innovation and Value Initiative/Academy Health. May 2023. Accessed November 4, 2024. https://valueresearch.org/wp-content/uploads/2024/01/05-2023-Economic-Impacts-Framework-Report_FINAL.pdf

7. Workshop #2: Time is money: capturing time effects of economic impacts. Center for Innovation & Value Research. Accessed November 4, 2024. https://valueresearch.org/pcei-interactive-workshops/

8. @Centerforinnovationandvalueresearc. The Center for Innovation & Value Research is excited to announce the release of our new learning report, “Patient Journey Mapping to Inform Economic Impacts.” Based on the first of six workshops in the Patient-Centered Impacts Project, this report explores how patient journey mapping can illuminate the broad spectrum of economic challenges faced by patients and caregivers. October 29, 2024. Accessed November 4, 2024. https://www.linkedin.com/posts/centerforinnovationandvalueresearch_healthcareresearch-patientcentricity-economicimpacts-activity-7256998465220624385-lHGR/