2020-2021 Public Experience Research
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.
2019 Consumer Research: Messaging to Support Advance Care Planning
Based on a “social norms marketing approach,” this nationally representative survey and qualitative research was designed to develop and test concepts and language to promote engagement in advance care planning. The research includes messages and language that resonate across all populations, as well as a more detailed understanding of five different “segments” of the populations – why they have and have not engaged in this process and the language most likely to encourage them to act.
2018 Consumer Research: First Signs of Progress
The first ever Massachusetts statewide survey to assess change over time, and comparisons to national values, on measures of engagement in advance care planning and serious illness conversations as well as experiences of care for dying loved ones.
2017 Consumer Research: Deep Dive on Conversations
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.
Baseline 2016 Consumer Research
In 2016, the Coalition fielded the first of a series of surveys measuring Massachusetts residents’ views on serious illness and advance care planning communications and end-of-life care.