Study finds that trust in cancer information declined among Black Americans during the pandemic

Trust in information given out by the government on cancer fell sharply among the Black population—by almost half—during the COVID-19 pandemic, findings of a national U.S. study have shown.

Experts are warning the vital need to monitor whether this mistrust has persisted beyond the pandemic and whether it could potentially cause an upsurge in late or fatal diagnoses—following a lack of uptake of important cancer prevention measures such as routine screening and human papilloma virus (HPV) vaccinations.

The findings, published today in the Journal of Health Communication, come from research on data from 7,369 people who responded to the annual US Health Information National Trends Survey (HINTS). The authors compared responses from 2018, before the pandemic, and in 2020, during the pandemic, and looked at whether this varied according to people's race/ethnicity.

Overall, all those who took part in the survey said that they trusted cancer information from doctors, and this figure increased by around 3% during the pandemic compared with before.

But trust in cancer information from government health agencies varied significantly according to respondents' race/ethnicity, with a 53% decline in the odds of reporting a high degree of trust among non-Hispanic Black people during the pandemic compared with before COVID-19 emerged. Odds of reporting a high degree of trust in cancer information from family and friends also plummeted by 73% for this group, and trust in religious leaders by 9%.

In contrast, for all other racial/ethnic groups, trust levels remained stable between 2018 and 2020. HINTS aims to get an annual snapshot of cancer-related knowledge, attitudes and information-seeking across US adults aged over 18. The survey asked participants about their trust in information about cancer from government health agencies, doctors, friends and family, religious leaders or charitable organizations. Of those who took part, most (64%) were non-Hispanic white, 60% were aged over 45, and 69% had received at least some college education.

COVID-19 emerged during an era of heightened attention to systemic racism and the spread of misinformation via social media. For example, just two months after the pandemic was declared, George Floyd's murder by a police officer sparked widespread #BlackLivesMatter protests. As the pandemic unfolded, it began to emerge that more Black and ethnic minority people than white were being hospitalized with COVID-19 and dying from the disease, and misinformation about the reasons for this proliferated on social media. Against this backdrop, there was also inconsistent advice on COVID-19 from politicians.

Senior author of the study, Professor Erin Kobetz from the Miller School of Medicine at the University of Miami, comments, "Politically charged messaging around COVID-19 and heightened media attention to institutional racism and racial inequities may have intensified historically rooted distrust among non-Hispanic Black people."

"The response to the pandemic continues to be highly politicized. Governmental agencies and leaders have provided guidance [e.g. on mask-wearing and social distancing] that is at times inconsistent and contradictory to scientific consensus."

Kobetz and colleagues suggest that this may have undermined people's willingness to stick to policies and recommendations designed to stop the virus spreading. At the same time, other research has shown that the greater number of cancer cases and deaths among Black ethnicities compared with white has worsened as healthcare systems and resources were stretched during the pandemic.

"This study is significant because it provides early insight into the actions we may need to take to rebuild trust in health information as a means to advance health equity in spite of the societal shifts that have accompanied the COVID-19 pandemic," added Kobetz, a professor of Medicine and Public Health Sciences.

The loss of trust in cancer information from authorities like government health agencies suggests it will be important to monitor for changing patterns in the use of cancer prevention services. This could, further down the line, exacerbate racial/ethnic disparities in cancer cases and deaths, the paper authors say.

One route to head off these problems could be to capitalize on study's finding that trust in doctors remains high among non-Hispanic Black people. This highlights the importance of everyone having access to a doctor so that recommendations for cancer screening and vaccination are communicated effectively to all, regardless of their background or ethnicity.

The study authors also suggest training doctors on implicit racial/ethnic biases and improving patient-centered communication with those who tend to have less contact with healthcare, to nurture trust and improve the use of cancer prevention services.

Kobetz and colleagues say that organizations should adopt health equity frameworks to guide their community outreach as well as advocacy work, so that marginalized populations are not left behind when it comes to preventative care. Bolstering partnerships between healthcare systems and community organizations will also help to make care more equitable, they recommend.