Senior man waiting in doctor’s exam room
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Rebuilding trust in medicine and science was a central theme at the recent Aspen Ideas Health event. This discussion followed the latest Edelman Trust Barometer, which highlighted concerning statistics about public confidence in these fields. While the findings are unsettling, they are not unexpected for those familiar with community sentiments. The pressing question remains: are we prepared to confront these insights?
The report underscores long-standing public skepticism towards health and science institutions, a trend the Pew Research Center has consistently observed. My experiences in the medical, research, and public health sectors across Africa, the Caribbean, and the United States have shown that communities often doubt scientific, medical, and health policies. The misconception that trust erosion is a recent development partly stems from the infrequent engagement of scientists, clinicians, and health leaders with patients and communities. We assumed trust existed because we didn’t hear otherwise. However, social media has changed the landscape, giving everyone a platform to share and receive information about science, regardless of its accuracy.
The History of Distrust
Reed Tuckson, Co-Founder of the Coalition for Trust in Science and Health, emphasized that distrust in health and science is not new.
Picture of a hand of an Indian woman crushing spices like ancient times
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He traced its roots from the Middle Ages through the COVID pandemic, highlighting movements advocating for medical freedom and pushing back against governmental control over personal health decisions, as well as conspiracy theories and skepticism about the scientific processes during the HIV epidemic.
Examples of Untrustworthiness
Historically, public distrust in medicine and science was considered a fringe issue. However, social media has shattered the illusion of unquestionable trust in these fields. This assumption was based on limited engagement with communities, leading to a belief in universal trust in medicine and science. Silence from the community was mistaken for agreement. Furthermore, the lack of community engagement is a sign of untrustworthiness, further fueling distrust.
My work, which connects health and science communities with the public, highlights areas that need addressing to bridge the trust gap. Here are some examples of the causes of trust erosion and how systems display untrustworthiness:
A recently discharged patient left the healthcare system still in pain, without a clear explanation of their condition or a referral for follow-up care. Despite claims of patient-centered care, these are the realities faced by many individuals in the healthcare system.
A military veteran discovered a new health diagnosis via his electronic health portal but couldn’t reach his doctor for clarification, leading to an anxiety attack and a visit to the emergency room. The lack of mechanisms for real-time information clarification is evident.
A community member remarked, “I won’t go to the doctor unless I am dying. I don’t like doctors because they use big words to confuse you.” There is a failure to communicate in accessible language.
When asked about research and clinical trials, people often respond, “I don’t want to be a guinea pig.” Past research harms have not been adequately addressed to build widespread trust.
At a 2009 church town hall meeting, someone questioned whether the government created HIV to eliminate Black and gay communities and if it was withholding the cure to protect corporate profits. These beliefs remain widespread, and there is a lack of acknowledgment of the role of money in health, which affects perceptions of research, care, and science.
During the pandemic, a woman asked, “If my COVID-19 test was negative, why would I need to get vaccinated?” This question underscores our inability to effectively communicate public health and scientific information, ensuring people understand how these systems operate for their benefit.
These examples illustrate the roots of ongoing distrust in health and science institutions. To address this distrust, we must move beyond mere research, discussions, and problem analysis. Building trust in science, public health, and medical institutions requires a commitment to changing organizational culture and behavior.
Addressing Distrust Requires Specific Action
Dr. Tuckson highlighted tribalism as a factor in distrust, noting that we align with groups that share our beliefs and narratives. Scientific experts are also a tribe, with their unique language, communication styles, and perspectives.
These groups within science, medicine, and public health need to adopt clear, straightforward communication. Quality systems should incorporate accountability metrics to ensure that processes are user-friendly. Leaders should engage with communities, listening and addressing hard, skeptical questions. Researchers must be open to adjusting protocols and strategies to address concerns and barriers to participation. These shifts challenge entrenched systems that value publications and presentations. Is change achievable?
The Aspen session began with the statement: “The Edelman Trust Barometer has us worried.” Rightfully so. The community is expressing its concerns loudly. Although the issue is not new, recent data can serve as a catalyst for the trust-building efforts that this moment demands. Let’s approach this with humility and urgency.
