(11) Patient perspectives on health insurance design: Experiences of beneficiaries with chronic diseases

Background: : Approximately 60% of Americans have a chronic illness yet there is a persistent lack of evidence from real-world experiences of patients with chronic diseases to inform insurance design evolution.

Objective: : To provide patient-centered evidence for policy and academic discussions on health insurance reform, focusing on the lived experiences of beneficiaries with chronic diseases, who are high utilizers of insurance and therefore are more exposed to insurance design components.

Methods: : A mixed-methods study gathered insights from U.S. residents with chronic diseases and continuous health insurance coverage. Data were collected through a 46-item online survey and six 120-minute virtual focus groups. The study explored participants’ perspectives on medication access, affordability, cost-sharing, and potential benefit design changes. Survey data underwent descriptive statistical analysis, while focus group transcripts and observations were thematically analyzed using MAXQDA software.

Results: : In total, 146 patients across 15 chronic diseases completed the survey; 29 of these then participated in focus groups. Although most expressed satisfaction with their health plan overall, significant concerns emerged around affordability of prescription medication due to high deductibles and cost-exposure, the disproportionate effects of cost-exposure based on income, and the unpredictability of OOP costs. For some participants, the cost burden was so significant that it led to financial debt, therapy abandonment, a worsening of their condition, or mental health issues. Most stated that revisions to insurance design were necessary, including broad support for multiple policy solutions to redesign insurance and adjust cost-exposure for patients with chronic disease.

Conclusions: : Chronic disease patients face disproportionate financial burdens under current insurance designs, often leading to adverse health and financial outcomes. This study suggests that benefit designs with high OOP costs can undermine both insurance’s financial risk protection and access to medically necessary care. Despite recent calls for insurance reform, academic discussions show a persistent gap in patient-centered evidence that reflects the real-world experiences faced by a population that relies on insurance the most. Findings in this study highlight the need for value-based benefit designs that incorporate patient perspectives and address the needs of beneficiaries with chronic diseases in the United States.

Sponsorship:: Johnson & Johnson Scientific Affairs