Patients want and deserve better from the U.S. health care system. Despite ongoing efforts to make the health care system more patient-centered – in which the unique goals, needs, and life experiences of patients and their caregivers are at the center of care decisions – persistent and well-documented barriers remain.

  • Members of the public rank the affordability of health care among the biggest problems facing the country. In a national survey of adults, more than half of respondents reported making sacrifices in health care, such as delaying or skipping care, experiencing pain, or doing without medications, due to cost concerns.
     
  • More than 1 in 5 U.S. adults have experienced discrimination at least once while receiving health care, according to a 2019 national survey. Racial discrimination was the most commonly reported type of discrimination, followed by discrimination based on educational or income level, weight, sex, and age. Black adults are nearly three times more likely than Whites and twice as likely as Latinos to report being discriminated against or unfairly judged by health care providers and their staff.
     
  • A majority of physicians (98 percent) say their patients trust them, but only 83 percent of the general public says their doctors trust what they say, according to national surveys.

With support from the Robert Wood Johnson Foundation, AcademyHealth and Public Agenda conducted focus groups in four U.S. cities in 2020 and 2021 to understand people’s health care experiences at the local level and the changes they would like to see to make the health care system truly centered on the goals and needs of patients. Each focus group included a diverse mix of people who were covered by Medicare, Medicaid, or were without insurance, and who had a chronic condition or a recent hospitalization. Themes from the focus group discussions helped inform a subsequent community forum in each city, in which patients, providers, advocates, policymakers, and others convened virtually to explore local challenges and opportunities to making patient-centered care a reality. 

The Power of Listening to Patient Voices for Health Care Systems Change

The words, experiences, and ideas of focus group participants are captured in three videos that highlight key themes:

  • For health care to be patient-centered, it must be affordable and simple. Too often, patients shoulder the burden of navigating an expensive, complex, and uncoordinated system. This needs to change.

  • Patients must be respected. Period. Health care should be free of discrimination based on race, income, insurance status, and other factors. Only then can all people receive the care they need to be healthy and thrive.

  • Patients must be listened to, believed, and treated with compassion by staff at all levels of the health care system. Everyone in the health care system has a role to play in fostering trusting relationships that can lead to better care and better health.

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