2018 Consumer Research: First Signs of Progress

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.

Following up with a cohort of respondents who participated in the Coalition’s 2016 baseline survey, this survey dove deep into the content of conversations between doctors and loved ones. It also included an expanded set of questions about the experiences of care for respondents who had a loved one die recently in Massachusetts.