In February, the Census Bureau released data showing total adult and household medical debt in the United States for 2021. Results from the Income and Program Participation Survey demonstrate that medical debt is a major financial constraint for 20 million adults, who declare unpaid medical expenses. bills over $250 in December 2021. The breakdown shows 14 million in this group owe more than $1,000 and 3 million owe more than $10,000. Collectively, total medical debt stood at $220 billion for 2021.¹

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

The report, “Uncovering the True Cost of Healthcare: Mapping the Patient Journey to Inform Economic Impacts,” is the second phase of the Patient-Centered Economic Impacts Project.⁵—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 the final outcomes of the first workshop out of a total of 6 intended to comprehensively examine the scope of the economic impact of a health system journey on patients and caregivers.²

This research represents the results of the first of 6 Center for Innovation & Value Research workshops intended to comprehensively map the patient journey and economic impact that extends beyond patients, to their families and caregivers. | Image credit: © Center for Innovation and Value Research

Patient journey mapping

Patients, caregivers, researchers and others (N=54) attended the July 18 workshop which focused on “mapping what patients and their families experience when they receive health care.” According to the report, a journey map aims to show gaps in health and social care and show costs missed by researchers, patients and health care providers, with the aim of highlighting where more Great help with financial navigation is needed and how to optimize health. care delivery and treatment by streamlining processes. The goal can be narrow or broad, and it must be grounded in lived experience.

One of the core principles of the workshop was the guiding principle of understanding the whole patient journey. It began with a discussion between a patient, Jae Samuel, and a researcher, Elisabeth Oehrlein, PhD, MS, founder of Applied Patient Experience, LLC, with Jae highlighting additional pressures due to unexpected economic obstacles. On top of his healthcare and daily family expenses, his wife was laid off while he battled multiple myeloma; he experienced a series of crises (no car, which meant paying for public transportation, which added to the economic stress of having to deal with his disability insurance); and there were no mental health services that could have supported him and his family during this time – services that also carry high costs.

The report notes that in patient-centered research, mapping can also be useful to better understand the natural history of disease, identify patient comparators (e.g., different treatment options and their financial effects) and select the results to measure. Additionally, it can facilitate shifting the traditional perspective of journey mapping from health systems and payers to patients, their caregivers, and families, aggregating data, and drawing much-needed attention to the complexity of the care journey health care for people living with serious health problems. .

Key steps and considerations when mapping the patient experience

The report explains that while the focus of journey mapping can be narrow or broad, there is a more defined step-by-step framework that better uncovers economic impacts. These steps are:

• Clearly define the objective
• Determine data sources and methods
• Develop an analysis plan to map steps through patient experiences
• Write the patient experience map
• Disseminate and use the patient experience map

Additionally, key considerations that should always be kept in mind are:

• Build trust with those who have the lived experiences being mapped and remain transparent in communications about the purpose of the research, present and respect.
• Uncover hidden costs by paying close attention to potential clues that indicate hidden financial burdens, such as housing insecurity.
• Exploring the potential ripple effects of patient financial burden
• Gain system insights by remembering that these journeys are incredibly complex and the knowledge gained can benefit future policy initiatives targeting improved patient-centered resources.
• Leverage story maps for impact by sharing them with stakeholders, policymakers, and the public to advance advocacy and generate meaningful change.

Next steps: Workshop 2

The second of 6 workshops, “Time is Money: Capturing the Temporal Effects of Economic Impacts,” will take place on November 14 and will, among other objectives, attempt to answer 3 key questions.⁷:

• What are the economic impacts most felt in terms of time lost by patients and caregivers?
• What aspects of time are most important to measure?
• How do these time costs differ across ages, demographics, and socioeconomic backgrounds?

The three guest speakers are Tina Aswani-Omprakash, MPH, president and co-founder of the 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 this page for more details on the 4 remaining interactive workshops.

References

1. Rakshit S, Rae M, Claxton G, Amin K, Cox C. The medical debt burden 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: Mapping the Patient Journey to Inform the Economy: Learning Report from Impacts Workshop #1. Center for Innovation and 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 the publication of a patient-centered economic impact learning report. Press release. Center for Innovation and Value Research. October 17, 2024. Accessed November 4, 2024. https://valueresearch.org/press-release-the-center-announces-release-of-patient-centered-enomic-impacts-learning-report/

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

5. Patient-centered economic impacts project. Center for Innovation and Value Research. Accessed November 4, 2024. https://valueresearch.org/what-we-do/defining-solutions/nomic-impact/

6. Malik E, Bright J, Cope E, Edmnuds M. A research framework for understanding the full economic impacts on patients and caregivers. Innovation and Value Initiative/Health Academy. 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 the Temporal Effects of Economic Impacts. Center for Innovation and Value Research. Accessed November 4, 2024. https://valueresearch.org/pcei-interactive-workshops/

8. @Centerforinnovationandvalueresearch. The Center for Innovation and Value Research is pleased to announce the release of our new learning report, “Mapping the Patient Journey 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 wide range of economic challenges faced by patients and caregivers. October 29, 2024. Accessed November 4, 2024.