A clear majority of adults say the U.S. health system routinely discriminates, according to a survey conducted by NORC at the University of Chicago. Fifty-nine percent (59%) of adult consumers say the health care system discriminates at least “somewhat,” with 49% of physicians agreeing.
About one in every eight adults (12%) say they have been discriminated against by a U.S. health care facility or office, with Black individuals being twice as likely to experience discrimination in a health care facility compared to white counterparts. The survey shows that experiences of discrimination affect trust in U.S. health care. People who report being discriminated against in a health care setting are twice as likely to say they do not trust the system.
The American Board of Internal Medicine (ABIM) Foundation is spearheading the Building Trust initiative, a national effort to focus on building trust as a core organizational strategy for improving health care. It is working collaboratively with all health care stakeholders, including patients, clinicians, system leaders and others. Nine years ago, the ABIM Foundation created the Choosing Wisely initiative, which was nationally recognized for promoting conversations between patients and their clinicians about curbing the overuse of unnecessary medical care.
“Just like the deep impact of systemic racism being felt in all aspects of society, any form of discrimination fuels mistrust between patients and the health care system patients rely on to treat them,” said Richard J. Baron, MD, president and chief executive officer of the ABIM Foundation. “Health care stakeholders must collaborate to identify and address contributors to bias, which worsen health outcomes, especially for people of color.”
Apart from gaps in trust in the health care system, instances of discrimination are similar when looking at relationships between individual patients and their doctors. About one in eight patients (12%) say they have experienced discrimination by a doctor, with Black individuals being almost twice as likely as the general population to report discrimination by a doctor. More than one in five Black patients (21%) report discrimination by a doctor, versus 11% of Hispanic adults and 8% of Asian adults.
Although the survey shows patients and physicians enjoy mutually high levels of trust with each other overall, Black and Hispanic adults are significantly less likely to say their doctors demonstrate trust-building behaviors. For example, 86% of white adults say they believe their physicians trust what they say, compared to 76% of Black adults and 77% of Hispanic adults. Eighty percent (80%) of white patients say their doctor spends an appropriate amount of time with them, compared to 68% of Hispanic adults and 73% of Black adults. Seventy-seven percent (77%) of white adults say their physician cares about them, compared to 67% of Hispanic adults and 71% of Black adults.
“Achieving greater equity and less discrimination in health care requires more understanding about what it takes to build truly trusting relationships,” said Daniel Wolfson, executive vice president and chief operating officer of the ABIM Foundation. “Patients, clinicians and system leaders all want more equitable care and better outcomes, and part of the solution lies with increasing trust.”
Despite a clear majority of patients believing discrimination in health care is common, the survey shows 81% of physicians give their employer a good grade-either an A or B-in their efforts to address health equity. Physicians say they are optimistic that their health system will improve diversity and equity in the next five years. Sixty-two percent (62%) say their own health system will improve equity in patient outcomes in the next five years. More than half of physicians (56%) believe diversity in the physician workforce will improve over the next five years. Fewer physicians (49%) think diversity in health system leadership will improve over the same period.
The NORC research is comprised of two surveys, one with physicians and one with consumers. The physician survey is a non-probability sample of 600 physicians. The consumer survey is a probability-based sample of 2,069 respondents with oversamples for Black, Hispanic and Asian respondents and has a margin of error of +/- 3.15 percentage points. Surveys were conducted between Dec. 29, 2020, and Feb. 5, 2021.
Last month the ABIM Foundation released research demonstrating diminished trust among physicians and consumers in health system leaders and government agencies during the COVID-19 pandemic.
The majority of surveyed Americans had an inadequate understanding of palliative care, and frequency of health care utilization was one determinant of knowledge, according to a study published in Cancer Epidemiology, Biomarkers & Prevention, a journal of the American Association for Cancer Research.
Palliative care aims to improve the quality of life for patients and caretakers by addressing the physical, psychological, and logistical challenges associated with a disease or its treatment. In contrast to hospice, which provides comfort care for patients who have stopped treatment and are near the end of life, palliative care serves as an adjunct to life-sustaining treatments by addressing the side effects of treatment or symptoms of the disease.
Despite the known benefits of palliative care and its endorsement by the American Society of Clinical Oncology and the National Comprehensive Cancer Network, we have not seen an increased uptake of palliative care by those who need it most, said Motolani Ogunsanya, PhD, an assistant professor at The University of Oklahoma Health Sciences Center. A common misconception is that palliative care is only for end-of-life care when, in fact, it can begin at any point in the disease course.
To study the extent of peoples knowledge about palliative care and understand how various factors impact knowledge of palliative care across the American population, Ogunsanya and colleagues analyzed data from a National Cancer Institutes Health Information National Trends Survey (HINTS) from 2018. The dataset included self-reported demographic and clinical information, such as sex, age, education level, current health status, cancer history, and frequency of health care utilization, among others. Respondents self-reported their knowledge of palliative care by selecting between: Ive never heard of it, I know a little bit about palliative care, and I know what palliative care is, and I could explain it to someone else. The first two responses were grouped together as inadequate knowledge, and the final response was considered adequate knowledge.
Among the 3,450 survey respondents, approximately 65 percent identified as non-Hispanic white, at least 90 percent had health insurance, about 60 percent had utilized the health care system more than twice in the past year, and about 10 percent had been previously diagnosed with cancer.
Overall, only 11 percent of the respondents reported adequate knowledge of palliative care. Women and married individuals were twice as likely to have adequate knowledge when compared with men and single respondents, respectively. Those who had a college degree were over 13-times more likely to have
adequate knowledge of palliative care compared with respondents without a high school degree.
Health care utilization was also associated with knowledge of palliative care, as those with a regular source of medical care were 2.67 times more likely to have adequate knowledge of palliative care than those without regular medical care. In addition, respondents with a prior cancer diagnosis were 51 percent more likely to have adequate knowledge of palliative care than those who had never been diagnosed with cancer. Ogunsanya noted that this might be due to the increased engagement patients with cancer have with the health care system.
We found that in addition to personal factors, such as education level or marital status, the frequency of health care utilization had a significant impact on an individuals understanding of palliative care, said Ogunsanya. This is a novel finding for the palliative care field and provides important insight into how we might be able to improve knowledge of this service.
Since health care providers are often the first and most trusted source of health care information, educating physicians on palliative care and encouraging them to discuss it with their patients and caretakers is one potential strategy to increase understanding of palliative care, Ogunsanya noted. She added that addressing additional barriers to palliative care, such as misconceptions and lack of resources or time, are also important approaches to increasing awareness.
A limitation of the study was that knowledge of palliative care was self-reported; however, Ogunsanya noted that this mode of data collection also provided an important perspective. How someone perceives their own knowledge of palliative care may reveal more about their likelihood to pursue palliative care than a more objective measure, she explained. If someone is not confident in their knowledge of palliative care, they may be less inclined to ask for it, regardless of how well they do understand it.
Additional limitations of the study included the exclusion of individuals who did not speak English or Spanish and those without a permanent address.
This research was supported by The University of Oklahoma Health Sciences Center. Ogunsanya declares no conflicts of interest.