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The basics:

• A recent study from Stevens Institute of Technology found that doctors often develop strong negative views of patients who disclose incorrect or unreasonable health-related beliefs.
• This can lead to a wider communication gap, misdiagnosis and ineffective treatment.
• The researchers suggest doctors need to overcome their tendency to judge patients and encourage them to share their thoughts, even incorrect ones, to improve communication and trust.

At the doctor’s office, patients are expected to be forthcoming about their symptoms, behaviors and health-related beliefs so that health care professionals can effectively diagnose and treat illnesses, as well as educate on them on how to stay healthy in the future. But new research from Stevens Institute of Technology in Hoboken uncovered a troubling trend that could have implications for care and health outcomes.

The study, which was published Aug. 2 in Medical Decision Making, found that doctors develop strong negative views of patients who disclose incorrect or unreasonable health-related beliefs.

Additionally, many patients feel as though they may be judged if they share mistaken beliefs, which could widen the communication gap with their health care providers, according to the research. As a result, they may withhold important information from their doctors, leading to misdiagnosis, ineffective treatments or missed opportunities for education to correct misinformation.

To understand how people think about sharing information with health care professionals, the team surveyed over 350 patients between the ages of 18 to 65 and over 200 primary care physicians across the U.S.

As part of the questionnaire, participants were presented with scenarios of patients sharing various medical beliefs, ranging from: reasonable statements, like believing that eating sugar causes diabetes; unreasonable statements, like drinking carrot juice cures diabetes; conspiracy theories, like thinking pharmaceutical companies deliberately cause diabetes to create more customers for insulin.

The findings determined that both laypeople and health care professionals regard patients more negatively the more unreasonable their expressed beliefs were. The study also showed that most people have at least some incorrect health-related beliefs, including common misconceptions like vitamin C can cure a cold. Since many patients often can’t distinguish between incorrect and correct health information, they may err on the side of caution and withhold even accurate beliefs to avoid potential judgment.

Samantha Kleinberg, the study’s lead researcher and an associate professor in the computer science department at Stevens Institute of Technology, said, “People worry about their doctors looking down on them – and it turns out that’s an entirely rational concern. Our study suggests that doctors really do judge patients harshly if they share information or beliefs that they disagree with.”

She went on to describe that particular result as both “surprising” and “depressing.”

People worry about their doctors looking down on them – and it turns out that’s an entirely rational concern.
– Samantha Kleinberg, Stevens Institute of Technology

“Laypeople aren’t expected to have medical expertise, so doctors often have to correct mistaken beliefs on health issues. That shouldn’t be something that leads doctors to view patients more negatively,” Kleinberg said, adding, “We rely on our doctors to educate us and help us overcome these medical misconceptions—but that’s only possible if we’re able to express our ideas freely, without fear of being judged when we get things wrong.”

According to Kleinberg, it’s unclear “whether the judgment from doctors is becoming more severe over time.”

“Patients withholding information goes back before COVID. We know at least that beforehand patients were worried that their doctors might judge some things and may underreport something like drinking alcohol,” she explained.

“Then, if you ask doctors, their default is that they multiply everything by two to everything you say. Which is sort of funny because then if you know the doctors do that, then maybe you adjust what you say. And so, it’s like an arms race of ‘Well, now I hear that maybe I shouldn’t be honest, I should underreport because my doctor’s going to multiply by two since they think that all the patients lie,”” Kleinberg went on.

The research topic stemmed from ongoing work she’s done with decision-making studies, especially with patients and laypeople, according to Kleinberg. “And, what do they actually believe, because we found that has a pretty large bearing on how they interpret new information and how they use it to make decisions,” she said. “If a doctor tells them something they should for their health, but the patient believes all this other stuff about vaccines or medications…then it goes in one ear and out the other.”

“So, we’ve been developing ways to figure out how do you take into account people’s beliefs? How do you help the doctor better understand patient’s beliefs?” she said.

Next up, Kleinberg and her team will be doing studies with doctors and patients newly diagnosed with Type 2 diabetes to explore how sharing patient beliefs affects actual medical encounters and treatment choices.

A culture change

Although researchers acknowledged additional studies must be done to explore how these negative perceptions affect the care experience, Kleinberg said it’s clear that physicians need to do more to improve medical culture. As part of that process, doctors need to become aware of their own biases and work actively to create a space where patients feel safe sharing their thoughts and health-related beliefs – no matter how inaccurate they might be, she said.

“If we want to have clear communication between patients and health care professionals, we need to change the way that doctors think about patients who are misinformed,” Kleinberg said. “Doctors need to overcome their tendency to judge patients, and actively encourage patients to share their thoughts—even their incorrect ones—much more freely than they currently do.”

Doctors need to … actively encourage patients to share their thoughts—even their incorrect ones—much more freely than they currently do.
– Samantha Kleinberg, Stevens Institute of Technology

Kleinberg is optimistic the landscape can improve. “There have been interventions to improve empathy among doctors and one component of that is taking the perspective of the patient, imagining what it’s like to be a patient in your office and why they believe the things they do and what their experience is like. There’s also been interventions showing you can improve empathy among doctors through courses. It’s a skill you can learn. It’s not like you have it or you don’t,” she said.

“These are skills that are important for building rapport and trust with patients. There are studies that patients trust you more, they’re more likely to follow your recommendations. And so, if you want patients to take their medication and do the things you’re recommending, this is one way to improve that.”

Another positive effect – some research has found that increasing empathy among physicians and nurses decreases overall burnout rate in the profession. Kleinberg called that “a win-win” because it not only improves patient care but reduces risks for health care professionals.

Onur Asan, an associate professor at Stevens Institute of Technology’s school of systems and enterprises and member of the research team, agreed that “the degree to which health care professionals held negative perceptions toward patients espousing misinformation was surprising.”

However, it also underscores the need for additional support and resources for doctors so they can effectively treat such patients, Asan said.

As for patients, the takeaway should be that they find a doctor that they trust and have a good rapport with, Kleinberg said. “One who listens to your concerns and isn’t going to be judgmental about them,” said Kleinberg. I also maybe wouldn’t share information that is outside of the mainstream that’s not relevant. And so, if you’re talking about diabetes and maybe have some out-of-the-box beliefs about health in general or vaccines that’s not actually relevant for your care, there could be a downside to sharing that information.”

Dealing with misinformation

Given the wealth of both accurate and inaccurate content related to health and wellness that’s readily available online, it’s becoming more important than ever that patients feel comfortable talking about their beliefs with doctors.

Dr. Iris Herrera, chief medical information officer at University Hospital in Newark, believes the rise of misinformation “has contributed to an increase in patient misconceptions” and that’s a trend hospital leaders need to take seriously to ensure individuals are receiving high-quality care and feel comfortable expressing their concerns.

Living in the Information Age may offer many benefits, but it also “creates opportunities for misinformation to spread and take hold,” said Dr. Reg Blaber, executive vice president and chief clinical officer at Marlton-based Virtua Health. “I saw this firsthand during the worst parts of the pandemic, when unfounded – sometimes dangerous – ideas about infection prevention populated social media channels.

“As medical providers, we often engage with people when they are most vulnerable and uncertain. Therefore, we must view these as teachable moments and opportunities to offer clarity,” Blaber said. “We must set the tone and build relationships based on trust and understanding… It is critical that patients have a safe space to ask questions, share their concerns and receive personalized feedback free from judgment.”

At University Hospital, the only state-owned academic health center in New Jersey, and Virtua Health’s network of hospitals, surgery centers and physician practices, health care teams are focused on fostering open communication and trust with patients.

Herrera said, “Patients come to us for help, often in moments of great need, and it is our responsibility as health care providers to ensure patients have a positive experience each time they engage the health care system.”

She went on to stress the importance of shared decision making, noting its links to improved outcomes and reduced inequities in treatment. “It’s also important for physicians to understand the barriers and disparities – including in housing, education, income, language, and literacy skills – that patients may face in their daily lives. We frequently speak with our providers about the importance of shared decision making and how social determinants of health can impact a person’s health,” Herrera stated.

“We also need to be respectful of our patients’ wishes. Our patients come from all different cultural and socioeconomic backgrounds and may have preferences or concerns that could affect their treatment plan,” she added.

Blaber said, “As a practicing cardiologist, I want my patients to view me as an ally, a resource and someone they can be fully honest with. I strive to ask questions that invite conversation and information-sharing. When I sense apprehension, I do what I can to relate on a human level. That can mean slowing down, sitting down, and avoiding clinical terms and phrases.”

Herrera echoed the sentiment, saying that doctors at University Hospital are “encouraged to put themselves into their patients’ shoes and take their time when meeting with patients.”

“These meetings give us the unique opportunity to address misconceptions and arm our patients with accurate information. Having these informative conversations can also lead to increased patient satisfaction, treatment adherence, and health outcomes,” she said.

As an academic medical center, University Hospital’s emphasis on teaching allows it to “continually educate medical students, residents, and physicians on the importance of open, honest, and informative communication with patients,” Herrera said.

“Institutionally, University Hospital has worked to strengthen accountability frameworks to include periodic assessments of workforce bias, cultural humility and responsiveness, and alignment with community needs,” she explained.

All University Hospital staff must go through implicit bias and structural racism training. The hospital has also launched educational campaigns to increase health literacy among underserved populations and educate communities about chronic diseases, preventive measures, and healthy lifestyle choices.

Meanwhile, Virtua Health recently kicked off the second year of a systemwide workforce development program that addresses patient experience, relationship building and personal growth.

Virtua Health is the largest system so far to rollout California-based Practicing Excellence’s platform of peer-to-peer video “micro-learnings.”  In 2023, 100% of the network’s leaders achieved certification in leading the patient experience and more than 85% of the workforce of 14,000 employees was certified in the introductory patient experience program.

In March, Virtua Health graduated its first cohort of “clinician coaches,” a group of 18 clinicians and staff members that are helping their colleagues cultivate strengths – including enhanced patient interactions – to improve the care experience and avoid burnout, Blaber said.  A second clinician cohort began in May.

“Every colleague, regardless of role, participates in an ongoing skill-development series designed to enhance human understanding, communication, respect and empathy,” Blaber said. “Overall, this journey has led us to a new relationship framework: ‘Everybody, Always.’ This is our way of summarizing that each person is deserving of outstanding, compassionate care, and that we must uphold these standards in every encounter.”