Our research was published in JAMA Network Open

Publication date: March 17, 2025

A new study published in JAMA Network Open and led by Carine Davila, Palliative Care Physician at Massachusetts General Hospital, in partnership with the Coalition, highlights critical disparities in the experience of patient-clinician communication among adults with serious illness. Compared to those without serious illness, patients with serious illness were significantly more likely to feel afraid to ask questions, experience unfair treatment, and leave medical visits unsure about next steps- troubling findings with the potential for serious impact on the health and well-being of these individuals. These findings underscore the need for health systems to prioritize strategies that support clear, respectful, and trust-building communication for those facing serious health challenges.

Related Topics

Impairment and Disability Identity and Perceptions of Trust, Respect, and Fairness

September 22, 2023

Using our 2020-2021 Public Experience Research, Salinger, et al. explored how individuals with disabilities perceived procedural justice in healthcare settings in this article. The survey found that those with impairments or identify as having a disability often report lower levels of trust, communication, respect, and fairness in their interactions with healthcare providers. However, health care perceptions differed between groups defined by impairment status and disability identity. These findings suggest a need for healthcare systems to better capture disability identity in order to improve their healthcare experiences.

2020-2021 Public Experience Research

November 23, 2021

This three-phased public experience research project leveraged participatory research methods to ensure that we’re asking about what really matters. Focused on the experiences of Black and Latinx people, low income people, and people with serious illness, disabilities and their caregivers, we sought to better understand their needs, their challenges in navigating the health care system, and their experiences engaging with clinicians in conversations about medical decisions and choices. Through varied language testing exercises (of clinician conversation statements, definitions of quality, care models and public-facing campaigns), the findings remind us of what everyone wants from their care and leverages that as a powerful lens for higher impact serious illness care quality improvement.