Ushma Patel, Director of Patient Engagement at the Center for Innovation & Value Research, shares her personal experience navigating the economic and emotional impacts of her daughter’s rare disease. She highlights the often-overlooked financial burdens families face beyond direct medical costs and discusses how the Center’s Patient-Centered Economic Impacts Project seeks to address these challenges in healthcare research and decision-making.
During my pregnancy, I never anticipated major health issues for myself or my baby. I was young, healthy, and active. At 36 weeks, I developed severe preeclampsia, HELLP syndrome (a rare complication affecting my blood and liver), and had an unanticipated C-section. I suffered a brain hemorrhage at five days postpartum and was transferred to different hospital for my care. My daughter remained in the NICU, where doctors initially suspected she had a heart murmur and jaundice. After a failure to thrive diagnosis, we learned she had several congenital heart defects and other serious health issues that required numerous procedures and surgeries.
There was a tremendous physical, mental, and emotional toll on our family, but also huge impacts on our career and social lives. Our careers came to a halt. I was forced to take extended leave and reduce my hours. My husband was unexpectedly laid off; furthering our financial distress. On top of car troubles, medical bills, and missed social opportunities, we struggled to grasp our new reality as caregivers and working parents for a child with a complex rare disease. Ten years later, we continue to experience the ripple effects in managing multiple specialists and navigating insurance coverage for her medications.
As a researcher in the patient engagement field, I have often wondered, “Why were these very significant economic impacts not captured?”. While direct medical costs were enormous, the impact on our lives went far beyond hospital bills.
In the U.S., the statistics are staggering. Approximately 45 percent of U.S. adults are worried about their ability to pay medical bills and people collectively owe at least $220 billion in medical debt.1 However, patients and their families face significant financial burdens beyond direct healthcare costs and medical debt, including the costs and time needed to travel to and from appointments, lost wages from unpaid sick time, and other impacts. Despite their importance, these costs- known as patient-centered economic impacts – are often missed in research and decision-making processes. Understanding these impacts is key to my work at the Center for Innovation & Value Research (the Center).
The Center is a non-profit research organization committed to advancing the science, practice, and use of health technology assessment (HTA) in healthcare. The Patient-Centered Economic Impacts Project aims to engage patients and caregivers to identify economic impacts beyond direct medical costs, and empower researchers, value assessors, and decision-makers to comprehensively address a broader range of economic burdens that patients experience. Phase I of the project culminated in, “A Research Framework to Understand the Full Range of Economic Impacts on Patients and Caregivers” which provides guidance for researchers, funders, and decision-makers to consider what economic impacts are essential to consider in research design. This second phase of work aims to engage patients, caregivers, researchers, and other stakeholders in a series of interactive workshops.
The first workshop, held on July 18th, focused on journey mapping as a tool to explore patient-centered economic impacts in research. The next workshop, scheduled for November will explore the time-related impacts on patients and caregivers, including navigating health care services and lost time from missed opportunities due to health conditions.
At the center of our work, a multi-stakeholder Steering Committee and a Community Advisory Board comprised of people with lived experience will provide insights, guidance, and co-leadership throughout the project.
As researchers continue to investigate the complexities of the healthcare system, it’s critical to start with the patients and caregivers and co-create comparative effectiveness research and other patient-centered outcomes research studies. Partnering with those who experience the greatest impact will help reveal the broader economic impacts they face.
Learn more about the Economic Impacts Project and upcoming Workshops: https://valueresearch.org/pcei-interactive-workshops/.
Read the first workshop’s learning report here.