Mapping the Hidden Financial Burdens of Health Care

In February, the Census Bureau released data showing total medical debt for US adults and families for 2021. Findings from the Income Survey and Program Division show that medical debt is a barrier to financial basis for 20 million adults, who report free medical care. debts 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. Overall, the total medical debt was $220 billion for 2021.¹

A new report from the Center for Innovation & Value Research provides a more detailed picture of the patient-centered economic effects of health care, considering that the debt created from the patient’s medical care does not only affect them, but their families and guardians, too,² and CEO Jason Spangler noted these costs “go beyond the obvious medical bills” to include running the health system.³ and includes “payments, transportation costs, labor effects, and caregiver burden.”⁴

The report, “Uncovering the True Costs of Health Care: Mapping the Patient Journey to Inform Economic Outcomes,” is the second phase of the Patient-Focused Economic Outcomes Project.⁵—the first step is the research plan outlined in the 2023 report from the Innovation and Value Initiative (now known as the Center for Innovation and Value Research) and AcademyHealth.⁶– and summarizes the final results from the first workshop of 6 sessions aimed at comprehensively examining the economic impact of travel on the health care system for patients and caregivers.²

Mapping the patient journey

Patients, caregivers, researchers and others (N = 54) attended a workshop on July 18 that included “mapping what patients and their families experience when they receive health care.” According to the report, the journey map aims to show the gaps in health care and social services and show the costs missed by researchers, patients and health care providers, with the aim of highlighting where help is needed a great financial and health improvement method. delivery of care and treatment by simplifying procedures. The focus can be narrow or broad, and should be based on life experience.

The basic purpose of this workshop was a guiding principle for understanding the patient journey, and it began with a conversation between the patient, Jae Samuel, and the researcher, Elisabeth Oehrlein, PhD, MS, founder of the Experience of Patient Care, LLC, and Jae highlighted additional pressures from unpredictable economic factors. In addition to his health care and the family’s daily expenses, his wife was laid off while battling multiple myeloma; he had a lot of problems (he didn’t have a car, which meant paying for public transportation, which in itself added to the economic pressure of living on disability insurance); and there were no mental health services to support him and his family during this time—services that also come with high out-of-pocket costs.

The report points out that within patient-centered research, the map can also help gain a greater understanding of the natural history of the disease, identifying patient populations (eg, different treatment options and outcomes of (see financial), and choosing the results to be measured. In addition, it can help change the traditional view of the travel map from health systems and payers to patients and their caregivers and families, collecting data, and bringing the necessary care of how difficult the health journey is for people living with serious health conditions. .

Steps and Key Points When Mapping the Patient Experience

The report explains that although the purpose of the travel map can be narrow or broad, there is a plan defined in steps that work to reveal the economic results. These steps are:

• Define the objective clearly
• Determine data sources and methods
• Create an assessment plan to map stages across patient experiences
• Map the patient experience
• Publish and implement a patient experience map

In addition, important points to consider are the following:

• Build trust in those with experiences being made and be open about discussions about the research project, present and respectful.
• Uncover hidden costs by paying attention to potential indicators of hidden financial problems, such as housing insecurity.
• Learn about the potential consequences of patients’ financial problems
• Gain management insight by remembering that these journeys are incredibly complex, and the knowledge gained can inform future policy initiatives focused on improved patient-centered tools.
• Develop 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: Seizing the Time of Economic Results,” will take place on November 14, and among other goals will try to answer 3 important questions.⁷:

• What are the economic impacts of the time costs felt most by patients and caregivers?
• What aspects of time are most important to measure?
• How do time costs vary across different age groups, demographics, and socio-economic conditions?

3 featured speakers are Tina Aswani-Omprakash, MPH, president and co-founder, IBD Society of South Asia; Beth Gore, CEO, Oley Foundation; and Casey Quinn, Ph.⁸

For more information

Please stay tuned to this page for more information on the remaining 4 courses.

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%20loan,%20by%20state,%202019-2021

2. Uncovering the true cost of health care: mapping the patient journey to inform economics: outcomes workshop #1 learning report. Center for Innovation and Qualitative 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 agency announces the release of a study report that affects patients. News release. Center for Innovation and Qualitative 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 outcomes 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%20e continues

5. Patient-Directed Economic Outcomes Project. Center for Innovation and Qualitative Research. Accessed November 4, 2024. https://valueresearch.org/what-we-do/defining-solutions/economic-impact/

6. Malik E, Bright J, Cope E, Edmnuds M. Research design to understand all types of economic outcomes for 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. Lesson #2: Time is money: taking time for economic consequences. Center for Innovation and Qualitative Research. Accessed November 4, 2024. https://valueresearch.org/pcei-interactive-workshops/

8. @Centerforinnovationandvalueresearch. The Center for Innovation and Quality Research is pleased to announce the release of our new study report, “Mapping the Patient Journey to Inform Economic Outcomes.” Based on the first of six Patient-Centered Outcomes Project workshops, this report examines how patient journey mapping can illuminate the economic challenges facing patients and caregivers. October 29, 2024. Accessed November 4, 2024. https://www.linkedin.com/posts/centerforinnovationandvalueresearch_healthcareresearch-patientcentricity-economicimpacts-activity-7256998465220624385-