Integrating Time Costs Into Research for Patient-Centered Care

Time costs, often overlooked in health care, create economic burdens for patients and caregivers, impacting income and well-being. | Image Credit: Fabio Balbi - stock.adobe.com

Recognizing how time costs vary for different people, measuring the quality of time, and realizing that time costs can lead to long-term challenges like reduced income could address the many economic challenges patients and caregivers face related to the time costs of navigating health care, according to a report from the Center for Innovation & Value Research.¹

A recent workshop titled “Time Is Money: Capturing Time Effects of Economic Impacts” was the second of 6 workshops designed to capture a patient-centered economic approach to health care.² As part of the Patient-Centered Economic Impacts Project, the new report summarizes the workshop and examines the time effects of a health care system journey on patients and caregivers.

Understanding Time Costs Through Lived Experience

On November 14, 2024, the virtual workshop drew more than 40 attendees, including patients, caregivers, researchers, and others.¹ Tina Aswani-Omprakash, MPA, cofounder and CEO of the South Asian IBD Alliance, led the workshop by sharing her life story of living with Crohn disease and multiple chronic conditions. Aswani-Omprakash explained the economic burdens she experienced, especially when her father died from the same condition, which left her in poverty without health insurance.

She emphasized how much she had to advocate for herself, for example, to receive a colonoscopy. Aswani-Omprakash and her family incurred time costs that resulted in her waiting months for specialist appointments and investing time in traveling and negotiating with insurance companies on drug coverage and prior authorizations.

These delays in diagnosis led to extended economic impacts, such as her inability to work for a longer period and the costs of maintaining health insurance through the Consolidated Omnibus Reconciliation Act (often known as COBRA) after losing her job, as well as mental health challenges stemming from the cultural stigma around illness and severe family stress.

Time Costs and Their Varied Impacts

During the workshop, faculty and participants stressed that the US health care system consistently devalues patients' and caregivers' time constraints. Consequently, the system leaves them with long waits for care, requires cumbersome paperwork, and shifts care coordination tasks onto patients and their families to reduce institutional costs. This work then creates time costs that patients, caregivers, and their families pay while interacting with the health care system.

Although some time costs may appear small, they often accumulate into significant impacts over months or years. Investing time in getting the right care from the right care team can produce positive impacts, such as health improvements. Most time cost impacts are negative, though, leaving long-term ripple effects.

Time Cost Impacts: Access, Administration, Self-Advocacy

Patients with limited access to care usually incur particularly steep time costs as they navigate barriers like provider shortages, longer travel times to reach care, or finding affordable care options when uninsured. Examples of time costs when giving or receiving care include spending time meeting a provider, learning about a condition and self-management, undergoing treatment, engaging in self-care activities, and providing care to a loved one at home.

Administrative burdens create time costs, including research, phone calls, consultations, and paperwork necessary to find care. Additionally, navigating the system, managing insurance, and coordinating among providers impact time costs as well. Finally, self-advocacy time costs result from system errors, fragmentation, discrimination, and a lack of respect for patients’ and caregivers’ time, which forces people to spend time and energy advocating for themselves or a loved one, including learning how to self-advocate.

From Daily Drifts to Life Shifts

Time costs disproportionately burden patients with multiple responsibilities, impacting work, education, and well-being. Flexible scheduling and social support can mitigate these effects, making it easier to absorb costs through small changes (drifts) rather than needing big adjustments (shifts) in work or lifestyle.

Effective care teams minimize time costs, while delays and self-advocacy strain resources, leading to stress, lost income, and reduced self-care. Time spent on health care tasks leads to lost personal time, increased stress, financial strain, and reduced participation in daily life. Ongoing pain or other symptoms while waiting for care also hinder engagement in work, school, family, or social activities.

Long-Term Consequences

Time costs accumulate, leading to long-term consequences for patients and caregivers, especially those facing homelessness or debt. Timely care can mitigate these costs, improving health outcomes, while delays exacerbate issues like disease progression and mental health decline. Positive outcomes can result in reduced or better-managed symptoms, resolution of a condition or slowed progression, and improved quality of life. Negative changes could include disease progression, complications, poor or declining physical or mental health, and reduced healthy time to focus on what matters most in life.

Lost earning potential, social isolation, and reduced resilience are common ripple effects. Systemic issues, such as disrespect for patient time and care fragmentation, hinder care access.

The workshop highlighted that valuing patient time fosters trust and improves care efficiency, benefiting both patients and providers.

A Path to Improved Outcomes

Researchers can provide a more holistic assessment of medical treatments and care delivery models by including time costs in research studies, ultimately generating evidence for how to improve outcomes for patients and their families. The workshop report explained that researchers often overlook time costs, which results in neglecting the full costs of care. To adopt a patient-centered approach to care, researchers suggest measuring time costs with more detail.

“Only then can we develop truly patient-centered interventions and policies that effectively address these challenges,” the authors concluded.

References

1. Uncovering the true cost of healthcare: time is money: capturing time effects of economic impacts workshop #2 learning report. Center for Innovation & Value Research. February 2025. Accessed February 27, 2025. https://valueresearch.org/wp-content/uploads/2025/02/PCEI-Workshop-2-Learning-Report_FINAL.pdf

2. Shaw ML. Mapping health care’s hidden financial burdens. AJMC^®. November 4, 2024. Accessed February 27, 2025. https://www.ajmc.com/view/mapping-health-care-s-hidden-financial-burdens