‘We must be louder’ to combat mistrust in science, medicine

A simmering mistrust of medical science and scientific institutions that had been long building in the United States boiled over during the COVID-19 pandemic.

Now, it seems the repercussions of that diminished trust have seeped into all aspects of the health care system.

“Diminishing trust in physicians in the United States parallels the general erosion of trust in public institutions and authority figures that has taken hold over the last decade,” Isaac O. Opole, MBChB, PhD, MACP, president of the American College of Physicians, told Healio Rheumatology. “In addition, there is an alarming rise in the so-called ‘anti-science’ movement, where more and more people mistrust scientific evidence, and often anchor to opposing views.”

The causes and ultimate effects of this erosion are myriad, complex and rooted in the broader history of America. For example, among historically underrepresented populations, high rates of mistrust regarding the overall health care system — and particularly clinical trials — follows generations upon generations of people experiencing racism and injustice in medicine at the institutional and individual levels.

“Perceptions based on historical harms such as the Tuskegee experiment leads to mistrust of the medical system, resulting in health care avoidance, health care inequity and poor outcomes,” Opole said.

However, more recently, the rampant misinformation, junk science and political polarization that have long smoldered in dark corners of the internet appear to have spread and gone mainstream.

Data from a Pew Research Center survey of 8,842 U.S. adults conducted from Sept. 25, 2023 to Oct. 1, 2023, suggest that the proportion of Americans who believe science has a positive impact on society decreased by 8% since November 2021, and by 16% points since before the pandemic.

During the COVID-19 pandemic, mixed messaging on masks and isolation periods, politically charged attacks on the credibility of health authorities, prolonged equipment shortages and poor funding of public health infrastructure brought about a wave of mistrust seemingly as contagious as the virus itself.

There was also a furor surrounding vaccines.

“There were a lot of politically motivated narratives that mainstreamed disinformation during the pandemic about big pharma, masking being ineffective and vaccines being dangerous, among others,” Katrine L. Wallace, PhD, adjunct assistant professor of epidemiology and biostatistics at University of Illinois at Chicago, told Healio Rheumatology.

According to Nina T. Harawa, PhD, MPH, director of the Policy Impact Core for the Center for HIV Identification, Prevention and Treatment Services (CHIPTS) at UCLA, and professor of medicine and epidemiology at UCLA and the Charles R. Drew University of Medicine and Science, this rampant misinformation and mistrust can lead to important and dire consequences for patients’ health.

“Lack of trust in physicians could harm continuity of care as patients shop different providers for second and third opinions, or to find providers whose views align with theirs, even if their opinions lack a solid evidence base,” she said. “Distrust in physicians can also contribute to unused medications and to missed visits, which cost the health care system and generally mean that other patients cannot be seen in the time allocated for the missed visits.”

Although Harawa said that organizations such as the ACP and the American Medical Association should own past mistakes to rebuild trust, she also argued that individual health care providers can help repair the damage with every interaction.

“The important thing to remember is that patients are much more likely to trust their physician, especially those physicians with whom they have established care, than they are to trust health care institutions or pharmaceutical companies,” she said.

One key area where physicians can begin rebuilding that trust is the way they speak to their patients about vaccines.

Trust is ‘compartmentalized’

A critical paper on the impact of the pandemic on trust and vaccines was published in 2024 by Roy H. Perlis, MD, MSc, director of the Center for Quantitative Health at Massachusetts General Hospital, and colleagues in JAMA Network Open. The analysis included 443,455 unique respondents aged 18 years or older in the United States. Results showed that trust in physicians and hospitals decreased from 71.5% in April 2020 to 40.1% in January 2024. Respondents who reported lower levels of trust were less likely to have been vaccinated for SARS-CoV-2 or influenza, or to have received boosters for COVID-19.

“We wanted to understand whether this misinformation, and the attacks on public health leaders and doctors, had impacted peoples’ level of trust,” Perlis said in a separate interview with Healio Rheumatology.

The short answer, it turns out, is “yes.”

“We saw hundreds of thousands of people continue to die from COVID-19 after a safe, effective vaccine became available in 2021 because they were told the vaccine was more dangerous than the disease,” Wallace said. “This is a perfect example of how misinformation and lack of trust in science and medicine actually kills people.”

However, this mistrust is just as often uneven, according to experts. Rather than applying their mistrust across the board, patients will typically express concerns with a specific aspect of their health and treatment — most commonly surrounding vaccines — even as they continue to trust their providers in other areas and with other complaints.

“Trust is often compartmentalized,” Jessica Greene, PhD, professor and the Luciano chair of health care policy at the Marxe School of Public and International Affairs at Baruch College, City University of New York, told Healio Rheumatology. “Patients can trust a physician to cut them open but not give them a vaccine.”

This is, in part, because vaccines are inextricably tied to broader messaging from the government and pharmaceutical companies, entities for which there is less trust compared to physicians, according to Greene.

“Physicians often have to separate themselves from the system to gain trust,” she said. “They need to tell patients, ‘I am here for you.’”

Data show that many physicians can achieve this separation. In a 2023 study published in Health Education Research, Lee and colleagues investigated associations between misinformation and measures taken to prevent COVID-19 in the first and second waves of the pandemic. Their results demonstrated complicated but unsurprising interactions. For example, belief in COVID-19 misinformation during the first wave of the pandemic significantly increased an individual’s likelihood of avoiding preventive behaviors in the second wave. However, after adjusting the analysis for trust in institutions, this effect disappeared, according to the findings. Meanwhile, individuals who expressed trust in institutions demonstrated a significantly decreased likelihood of avoiding preventative behaviors.

“Results suggest that building trust in institutions is essential in promoting COVID-19 preventive behaviors,” the researchers wrote.

Although the task of rebuilding trust in institutions like the U.S. government or pharmaceutical companies may lie beyond the scope of any individual provider, they can still be a reliable source of information. However, if physicians are to understand how best to build and maintain trust among their patients, it may be useful to know which patients are most likely to report mistrust.

Income the ‘largest predictor’ of mistrust

Understanding where mistrust lies can be challenging in the current environment, according to Opole.

“I am not aware of any rigorous demographic analysis of patients or populations most at risk for failure of trust,” he said. “There are, however, small studies and anecdotal reports in select populations.”

One such study was published in the International Journal of Equity Health by Purkey and MacKenzie in 2019. The authors conducted interviews with 31 people who had experienced homelessness, as well as 10 social service providers. They additionally assessed further qualitative data from 136 other health and social service providers.

“Health care services were experienced as stigmatizing and shaming, particularly for patients with concurrent substance use,” the researchers wrote.

They added that participants described a system that was “inflexible, designed for a perceived middle-class population, and that failed to take into account the needs and realities” of those seeking its care.

“When looking specifically at trust in physicians, the largest predictor appears to be income and not race or ethnicity,” Harawa said. “People with lower incomes tend to have lower trust in their providers, as do people who have experienced discriminatory treatment when seeking health care services.”

History is a major factor in this equation, particularly regarding discriminatory treatment, according to Harawa.

“Over history, providers have contributed to the development of racist pseudo-conditions — for example, drapetomania — and classification systems, participated in unethical medical research, opposed policies that would have led to broader access to health care in the United States such as Medicare and Medicaid, and denied needed care based on assumptions shaped by racism, xenophobia, sexism and heterosexism,” she said. “These histories must be taught and acknowledged because they contribute to intergenerational trauma and inequities.”

They also contribute to mistrust.

“Populations or groups that have faced historical discrimination, persecution and injustice in the health care system tend to be less trusting,” Opole said.

Another factor is political affiliation. Further findings from the Pew data set indicated that 38% of Republicans reported that they have “not too much” or “no confidence at all” in scientists. Conversely, 86% of Democrats report “at least a fair amount” of confidence that scientists act in the bests interest of the public.

However, this divide is not perfectly even. The proportion of Democrats and Democratic-leaning independents who reported having a “great deal” of confidence in scientists decreased from 55% in November 2020 to 37% more recently.

It is critical to consider that flawed information can impact people across the political spectrum.

“The spread of disinformation is a health equity issue because it disproportionally affects marginalized communities that already face barriers to health care,” Wallace said. “Misinformation further exacerbates health disparities by causing distrust in public health and medicine on top of these access-to-care issues.”

According to Harawa, physicians should be cognizant of mistrust regardless of the race, ethnicity or political affiliation of their patients.

“Providers need to first recognize signs of mistrust in their patients, as mistrust may not always be directly expressed,” she said. “These signs might include low engagement during clinical encounters, not divulging important information, or not adhering to medications.”

Providers can also address potential unspoken mistrust by asking patients about their prior experiences with the medical system, Harawa added.

“In doing so, they may uncover attitudes and memories that patients might carry with them to new encounters,” she said.

However, these are not the only strategies that can be used to rebuild trust on the personal level.

‘Bedside manner 101’

The first steps toward rebuilding trust are rooted in the foundations of being a physician, according to Perlis.

“Carving out time to actually listen to patients will go a long way,” he said. “In particular, when recommending a new treatment or additional tests, it is important to be clear about why we are making these recommendations. This is bedside manner 101, but in an era when there is so much pressure to see more patients more quickly, I am afraid the time to answer questions gets shorter and shorter.”

Compromise is another key component of basic bedside manner that can help build trust.

“Engage patients in decision-making and find middle ground when appropriate, to enable patients to take collective ownership of the decision-making process,” Opole said.

According to Harawa, strategies that increase transparency, such as asking permission before sharing evidenced-based information that counters unfounded patient beliefs, shared decision-making, and motivational interviewing can then be used, “with time and patience,” to regain trust and build alliances with patients.

Understanding variability among patients is another important detail.

“Interventions to restore trust will need to take into account that not everyone mistrusts doctors and hospitals for the same reason,” Perlis said. “Try to understand patient’s reasoning and understanding of differing beliefs. Say to them, ‘Help me understand this.’”

Admitting mistakes and missteps can also go a long way to a healthy doctor-patient relationship, according to Opole.

“Be honest, transparent and accountable for any errors or adverse outcomes that may impact patients,” he said. “Even when patients disagree with a recommendation, speak your truth quietly and clearly.”

When providers are able to understand the roots and nature of any individual patient’s lack of trust, they can then tailor their approach.

“We will likely need interventions that address several of the factors that contribute to patient mistrust,” Perlis said.

However, not all mistrust within the patient-physician dyad originates from the patient.

Although much focus is placed on the history and parameters of patient mistrust, another — often ignored — facet of the overall discussion pertains to the way providers feel about systems in which they work.

‘Less motivated, more burnout’

In a study published in January in The Joint Commission Journal on Quality and Patient Safety, Greene and colleagues investigated parameters surrounding the trust health care workers have in the institutions that employ them. According to the researchers, just 20.2% of the 353 respondents trusted their leadership “very much,” while 42.9% had lower levels of trust.

Importantly, 97.7% of respondents reported that their level of trust in institutional leadership impacted their professional lives.

The researchers suggested that efforts on the part of organizations to improve trust in their leaders could be beneficial.

“There is often a lack of transparent communications, where institutions are not sharing what is happening within the system or listening to the people on the ground,” Greene said. “This lack of trust may also be explained by a lack of respect and appreciation of health care workers.”

For health care workers, these issues can feel intensely personal, according to Greene.

“When health care workers do not trust their employers, they are less motivated, there is more burnout, they are disengaged, and they are doing the bare minimum to accomplish their tasks,” she said. “They are not volunteering for special projects or going the extra mile.”

These issues clearly bleed into patient care, Greene added.

“Health care workers have stressed that the systems often fail to prioritize patient care,” she said. “The focus is often on making money and not what is right for patients.”

Patients, in turn, can pick up on these systemic failures.

“It is important that providers advocate for the patients within their systems by taking patient complaints seriously, addressing suboptimal or inequitable care delivery practices that they observe, and advocating for transparency in institutional communications,” Harawa said.

Communication about these systemic issues is critical, according to Greene.

“The good news is that patients generally have much higher trust in their physicians than they do in the health care system or pharmaceutical or insurance companies,” she said.

Further data from the Pew report bear that out. Despite recent declines, scientists and medical scientists continue to be “held in high regard” compared with other groups in society, the researchers wrote. Business leaders, religious leaders, journalists and elected officials all scored lower than scientists in terms of the public’s perception that they act in other people’s best interests, according to the findings.

For Greene, at the heart of the issue is the relationship between money and trust.

“When cost of care becomes a barrier, the more patients are likely to separate from the health care system and end up going to sources of misinformation,” she said.

“There are also physicians who are working in organizations that they really do trust,” Greene added. “They communicate with their employees, put patients over profits and treat their workforce with respect. When the workforce has trust in the leadership, the patients are more likely to trust the providers, because the providers are more engaged and able to be committed to patient care.”

‘Willingness to change course’

According to Harawa, if institutions are to have a hand in rebuilding patient trust, they must recognize their part in diminishing it.

“Acknowledging the ways in which their own histories have diminished trust is a start,” she said. “For example, the AMA was once an avid supporter of segregated medical care in this country and helped block every major national push to achieve universal health care over the years. They have given an official apology for their actions related to medical segregation, worked to address evidence of bias in their scientific publications, and changed their position to one in favor of universal health care. These types of concrete actions demonstrate a willingness to change course and a desire to improve patient care.”

The ACP has made similar efforts, according to Opole.

“The College has a robust program on health equity that is intended to combat historical health care inequities and build trust through inclusive, diverse programming for patients and physicians,” he said.

Opole recognized that individual organizations cannot battle mistrust and misinformation alone, however.

“The College has collaborated with the American Board of Internal Medicine foundation in their ‘Building Trust’ initiative, which aims to rebuild trust between patients, clinicians’ health systems and communities, and address some of the root causes of mistrust and misinformation,” he said.

Trust can also begin at the training level, Opole added.

“The College is focusing on education through medical schools and health systems, with programs such as the ‘First Five Minutes,’ which trains learners and clinicians on how to approach patients and establish rapport and build enduring relationships through empathy and cultural sensitivity,” he said.

Ultimately, all players in the health care system bear some responsibility for patient trust, according to Wallace.

“We all have a responsibility to advocate for preventive care and to correct health misinformation,” she said. “Whether it is through advocacy efforts, in the doctor’s office, your own friend circle, or just your own online community — we are the experts and we have extremely valuable information to share. Misinformation is loud, so we must be louder.”

After all, the stakes could not be higher, Opole added.

“Medical practice is premised on trust in the physician, and the belief that medical interventions are based on scientific evidence,” he said. “The diminution of trust is a major threat to public health, and indeed, to our entire health care infrastructure.”

References:

Greene J, et al. 2025 Jt Comm J Qual Patient Saf. 2025; doi:10.1016/j.jcjq.2024.09.002. 

Klein LM, et al. Am J Health Promot. 2024;doi:10.1177/08901171231204480. 

Lee SJ, et al. Health Educ Res. 2023;doi:10.1093/her/cyac038.

Perlis RH, et al. JAMA Netw Open. 2024;doi:10.1001/jamanetworkopen.2024.24984.

For more information:

Jessica Greene, PhD, can be reached at 55 Lexington Ave. (at 24th Street), New York, NY 10010; email: jessica.greene@baruch.cuny.edu.

Nina T. Harawa, PhD, MPH, can be reached at 10833 Le Conte Ave., Los Angeles, CA 90095; email: nharawa@mednet.ucla.edu.

Isaac O. Opole, MBChB, PhD, MACP, can be reached at 3901 Rainbow Blvd., Kansas City, KS 66103; email: ahachadorian@acponline.org.

Roy H. Perlis, MD, MSc, can be reached at 185 Cambridge St., Boston, MA 02114; email: rperlis@mgh.harvard.edu.

Katrine L. Wallace, PhD, can be reached at 1601-3 W Taylor St., Chicago, IL 60612; email: kwalla2@uic.edu.