2023 Reframing Trust – A Path to Address Misinformation

Leaders from across health care gathered for the 2023 ABIM Foundation Forum to learn more about historical causes of mistrust and skepticism of science, to develop a deeper understanding of the connection between mistrust and misinformation, and to identify strategies that stakeholders across the system could employ to build trustworthiness and reduce the impact of medical misinformation. During three days of meetings, participants heard from a range of experts and worked together to develop new ideas for addressing the lack of trust that has undermined American medicine and the clinician-patient relationship.

Patient and Trainee Perspectives

Participants watched a video that featured four patients who had lost trust in the health care system:

• Lydia had not vaccinated her children after members of an online breastfeeding group—which she turned to after her physician dismissed her concerns about struggling to breastfeed—shared unfounded beliefs about vaccines; she changed her mind and had her children vaccinated after the COVID-19 pandemic began and she researched vaccine safety on her own.
• Hannah had a series of childhood illnesses that her physicians could not diagnose. She was eventually diagnosed with Crohn’s disease, but her surgeon dismissed her suggestion that she also had endometriosis and was skeptical of her desire to allow her gynecologist to observe her Crohn’s surgery. As it happened, Hannah did have severe endometriosis.
• Sondra lost trust after her primary care office repeatedly failed to make needed referrals, a failure that caused her to wonder whether the staff might have paid more attention to her requests if she were not a woman of color. The office staff acknowledged their mistakes and apologized.
• Sherrie incurred extraordinary medical costs after surgery to remove her colon; she went into septic shock after a second related procedure, followed by months in the hospital and subsequent surgeries. She owed more than $850,000, declared bankruptcy and pays about $900 per month toward her medical debt, and cannot afford recommended follow-up visits with her gastroenterologist.  

A panel discussed the importance of clinicians trusting in patients, the need for regulating the profession, and the importance of first encounters with patients, particularly when they are feeling vulnerable.

A resident and three medical students—winners of an essay contest cosponsored by the ABIM Foundation and the American Medical Students Association—delivered speeches based on their essays, in which they had reflected on an experience where they or someone they knew received, shared or acted upon misinformation in a health care setting.

President's Lecture

Lewis Grossman, JD, Ann Loeb Bronfman Professor of Law at American University’s Washington College of Law, and Sophia Rosenfeld, PhD, the Walter H. Annenberg Professor of History at the University of Pennsylvania, delivered the President’s Lecture – the Forum’s keynote address.

Professor Rosenfeld shared that physicians are traditionally considered trustworthy in two distinct ways: their ways of knowing things (their training and scientific expertise) and their moral disposition (they have their patients’ best interests in mind). In other words, she said, they have both epistemic and moral authority. She argued that both of those qualities are in crisis, not only from the spread of misinformation but also from longstanding mistrust that is increasing in some communities under new pressures, and that is subjecting physicians to a kind of skepticism that is unfamiliar for many of them.  

Professor Grossman added to the conversation, sharing that “You are the medical establishment and much of the country views you as godless despots.” Throughout American history, he said, a broad swath of the population has believed that people have the right to choose their medical treatments without government interference or compulsion, and that the medical establishment had controlled regulatory mechanisms in a way to squelch the people’s choices and increase their own wealth and power. These beliefs have been rooted in notions of bodily autonomy, freedom of conscience and opinion, and in freedom of religion.

A Report from the Front

Joe Smyser, the CEO of the Public Good Projects, shared that the level of online medical misinformation has gotten increasingly worse since 2019, despite various efforts to address it. “Not only is there more mis- and disinformation than ever before, but there is massive distrust and disillusionment with health care,” he said. “The politicization of misinformation has fueled the fire.” He noted that a significant majority of the world’s false information about vaccines is generated in the US, and that it takes only 24 hours for such claims to reach the world’s remotest corners. He predicted that the situation will continue to worsen, especially with the forthcoming presidential election campaign. 

The Forum concluded with a reflection of the meeting and a conversation about “where to go from here.” Richard J. Baron, MD, president and CEO of the American Board of Internal Medicine and the ABIM Foundation, closed the meeting by noting that physicians are not only members of the “knowledge elite” but are people, too, and they—and the system as a whole—needs to be better at “recognizing the ‘peopleness’ of others.”