The History of Distrust

As Reed Tuckson, Co-Founder of the Coalition for Trust in Science and Health, noted in his opening remarks, low trust in health and science is not a new

phenomenon. He traced its historical precedent from the Middle Ages forward through the COVID pandemic, from medical freedom movements rebuffing government interference in personal medical decisions and bodily autonomy, to the conspiracy theories and skepticism of the scientific process that ran through the HIV epidemic.

Examples of untrustworthiness

Despite this history, public distrust in medicine and science has historically been deemed fringe. Now, social media reveals the illusion we have held that medicine and science were largely and unquestionably trusted. It is an assumption we made simply because we made little consistent effort to go into communities and hear directly from the public. Thus, our belief that we were almost universally trusted as stewards of medicine, science and public health derived from silence. But silence does not confer confidence or agreement. In addition, our failure to engage communities is also a symptom of our untrustworthiness, which further fuels distrust.

My work, which bridges the health and science communities and the public, shows what must be addressed to narrow the trust gap. Here are several examples that reflect sources of the erosion of trust and ways in which our systems prove to be untrustworthy:

A patient recently discharged from the healthcare system left still in pain, without an understandable explanation of the condition or a connection to follow-up care. We profess commitments to patient-centered care but these are the experiences people endure in healthcare.

A military veteran learned of a new health condition through his electronic health portal and could not reach his doctor for an explanation. He suffered an anxiety attack and went to the emergency room. There are no obvious mechanisms within systems for people to obtain real-time explanations for this information.

A community member told me, “I won’t go to the doctor unless I am dying. I don’t like doctors because they use big words to confuse you.” We fail to communicate in plain language.

When asked about research and clinical trials, people often respond, "I don’t want to be a guinea pig." We have not effectively addressed past research harms in a manner that broadly and openly builds trust.

At a church town hall meeting in 2009, someone asked whether the government created HIV to eliminate Black and gay communities and whether it was withholding the cure to protect corporate profits. These beliefs remain prevalent, and we fail to acknowledge the optics of money in health and how it impacts engagement and 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 highlights our failures to communicate public health and scientific information, ensuring people have the foundational knowledge needed to understand how these systems work on their behalf.

In different ways, these examples point to the sources of persistent distrust in health and science institutions. We can learn from these examples, but to address distrust, our systems must move beyond research, convening, and discussion of the distrust problem. Building trust in our science, public health, and medical institutions requires a commitment to organizational culture and behavior change.

Addressing Distrust Requires Specific Action

Dr. Tuckson invoked tribalism as a cause of distrust, explaining that we gravitate to tribes that form our beliefs and narratives. Scientific experts are a tribe too, with their own language, communication styles and perspectives.

These tribes of science, medicine and public health must learn to communicate in plain language. Quality systems must integrate accountability metrics to ensure processes are navigable and user-friendly. Leaders must show up in communities to listen and to answer hard, skeptical questions. Researchers must be willing to modify protocols and strategies to address concerns and barriers to participation. These are challenging shifts in decades-old, entrenched systems whose most valued currencies are publications and presentations. Is it possible to change?

The Aspen session opened with a line: "The Edelman Trust Barometer has us worried." We should be. The community is speaking to us now at fever pitch. The concept may not be new, but new data can be a catalyst that compels attention and action toward the trust-building this moment deserves. Let’s listen and respond with humility and urgency.