A new report shows that whether care preferences for older adults are considered is heavily influenced by race, income, and other variables.

 “When thinking about your experiences with the healthcare system over the past year, how often were your preferences for care taken into account?”

This question was posed in a healthcare study to approximately 20,000 people over the age of 50 and living across the U.S. The University of Michigan Health and Retirement Study (HRS) is a longitudinal panel study surveying a representative sample of Americans. This ongoing study provides valuable data that researchers are using to address important questions about the challenges and opportunities of aging. The HRS is one of the first to explore the issue of person-centered care. Marc Cohen, PhD

In one of the first studies to examine this new data, three researchers analyzed responses to the question of healthcare preferences in a recent report on person-centered care. The researchers — Marc Cohen Ph.D., Ann Hwang M.D., and Jane Tavares Ph.D.— wanted to understand how aging adults experience care, if their preferences are acknowledged, and whether their experiences vary by race and ethnicity, wealth and income, and/or insurance status.

“The delivery of person-centered care — defined as care that is guided by individuals’ preferences, needs, and values — is an important factor in high-quality healthcare systems,” says Hwang.

Despite the healthcare industry’s assertions that it is becoming more patient-centered, the researchers found that one-third of all older adults (age 50 and over) said their care preferences were “never” or only “sometimes” considered.

Using 2016 HRS data — the most recent data available — the survey revealed stark disparities based on race and ethnicity. While 8% of White respondents said their needs and preferences were  never considered, 16% of Black and 27% of Hispanic respondents gave that answer. The researchers also found that, across all service settings, people who felt that the health system never took account of their care preferences were more likely to forego medical care. They visited a doctor fewer times and were less likely to use home care and outpatient surgery services. The largest impact was on use of prescription medications: they were 39% less likely to use prescription medications.

“Even when we held a lot of different variables constant — health status, income, their health insurance status — race and ethnicity came out as the strongest predictors,” says Cohen. “Many rarely or never feel like they’re heard and as a result, they were less likely to engage with the health system after having this experience. I think it’s easier to say people are fearful or distrustful of the health care system, but our study has shown that there’s a whole other important dimension relating to disparities and this is of people who don’t feel like they’re heard or listened to.”

Hwang says the results show “a tale of two health systems” where an individual’s experience of healthcare and how they’re treated is fundamentally different based on their race or ethnicity.

A correlation between having preferences considered and the quality of an individual’s personal health was also noted. People reporting that they only “sometimes” or “never” have their preferences taken into consideration reported their health as “fair” or “poor,” had a greater likelihood of suffering from depression, were more likely to be smokers, and were less likely to indicate their health has improved over the past two years. When people’s preferences were “ignored, they are more likely to report lower satisfaction with the health care system,” according to the report.

The researchers suggest one way to approach transforming health systems is having providers and patients see health care as a partnership. This entails involving patients, families, and community members at all levels of the healthcare system to create the conditions that allow person-centered care to happen.

“Person-centered care is a very holistic approach to care,” says Cohen. “It’s not based on treating a particular condition, but the entire person, and involves actually listening to what the patient feels matters most to them and what they need.”

Changing an organization’s culture and individual caregivers’ mindsets are two ways to approach altering a healthcare system’s approach to care delivery. The researchers suggest providers undergo training to learn how to effectively elicit opinions from their patients. A patient may not be comfortable sharing certain issues, but those may be important to the health concerns involved. Consequently, knowing how to approach patients and ask questions is central to person-centered care.

“There are things you can do as a clinician in an exam room or virtual exam room with the individual patient or family that supports person-centered care, and there’s also collective action that we can achieve through policy change through shifting the broader structure of the health care system,” says Hwang. “I think the need for both individual and collective action makes this difficult, but also means that there are lots of opportunities for all of us to contribute to the solution.”

“These findings regarding person-centered care are particularly salient in light of the COVID-19 pandemic,” says Tavares. “As providers work to get individuals vaccinated, mistrust and dissatisfaction with the health care system can hinder these efforts, particularly among people of color who have been disproportionately impacted by the virus. This underscores the critical need to begin working towards an integrated solution.”

Cohen is research director for the Center for Consumer Engagement in Health Innovation (CCEHI) and the co-director of the LeadingAge LTSS Center @ UMass Boston; Hwang is a practicing primary care physician and former director of CCEHI; Tavares is an associate lecturer in the Department of Gerontology at UMass Boston and a Research Fellow in the LTSS Center.