Building Trust To Overcome Misinformation

Misinformation is a critical threat to both health care delivery and health research. We have been confronted with that threat in very real and brutal terms over the past three years of navigating a global health pandemic. This has perhaps been most visible as unvaccinated patients—many relying on false information to make a decision that puts their lives and the lives of others at risk—have accounted for the majority of COVID-19-related hospitalizations and deaths. While misinformation has long existed, COVID-19 misinformation has had far more effect on the public, with a recent Henry J. Kaiser Family Foundation report finding that 78 percent of the public believes or is unsure about at least one false statement about the pandemic.

Accelerating the dissemination of new research findings in response to the pandemic has had many benefits, but it has also contributed to misinformation being spread through “science by press release” (when underreviewed or unvalidated studies garner widespread media attention based on announcements by communications departments). The extent to which this trend is undermining trust in expertise and undermining public support for science is not clear. Universities and faculty/researchers are not blameless here: In an increasingly competitive higher education environment, media attention is actively sought.

We believe mistrust is a key driver of susceptibility to accepting and acting on misinformation. Through an initiative focused on trust issues within health care, we are learning important lessons that can help us combat misinformation by building trust. From this work, it is apparent that most research on trust building has been done at the level of the clinician and patient, with far less at the institutional (trust between individuals and health care organizations) and community levels (trust between communities and health care organizations).

Mistrust Is AIA Driver Of Misinformation

To make progress, it is important to acknowledge that the proclivity to accept and rely on misinformation is a symptom of far more deep-seated fractures. As the Aspen Institute’s Commission on Information Disorder noted in their recent report, “Mis- and disinformation are not the root causes of society’s ills but, rather, expose society’s failures to overcome systemic problems, such as income inequality, racism, and corruption, which can be exploited to promote false information online.”

We would add one important item to that list of systemic problems: lack of trust. Trust is a precondition to societal cohesion and lack of it fuels misinformation by making it easier to discount and disbelieve what others hold as definitive fact. And societal failure to accept and acknowledge shared facts and evidence leads to real-world impacts. For example, a recent Lancet study found that countries’ death rates from COVID-19 were correlated more with trust in government than any structural aspects of pandemic preparedness—even more than with a “Pandemic Preparedness Index” created by the World Health Organization in the wake of Ebola to define structural readiness to respond to pandemics in a systematic way. In 2018, well before the pandemic, the RAND Corporation published a report on “Truth Decay,” which they define as “the diminishing reliance on facts and analysis in American public life”; the report links the trend to lowered trust in formerly respected sources of factual information and outlines how this phenomenon has characterized the past two decades of public discourse. Information and trust have a symbiotic relationship as lack of trust can stem from lack of information on the part of those who mistrust as well as those who are mistrusted.

For example, in 2020 the Pew Research Center found that no more than half of US adults believe journalists act in the best interests of the public, and 72 percent think news organizations do not do enough to tell audiences how their institutions are funded. We’ve also seen countless examples of how social media platforms have abused the public’s trust, from Facebook exploiting patient groups and capturing sensitive medical data from hospital websites to Twitter allowing unregulated hate speech.

Beyond media, the 2022 Edelman Trust Barometer found that government leaders garnered the least amount of trust out of all societal leaders, which includes journalists, CEOs, scientists, and others. One notable finding over 12 years of Edelman reports is the consistent inequality in trust in institutions overall between “informed public” respondents (defined by Edelman as the well-educated and the wealthy) and the general population. In 2020, 62 percent of the former reported trust versus only 48 percent of the latter. This year’s Barometer report also found that more people than last year (66 percent, up nine points) believe government leaders are purposely trying to mislead people.

Finally, mistrust in institutions and the spread of misinformation has also been well described among Black communities. This mistrust has been shaped over time by individual and collective experiences of untrustworthiness, persistent racism, and socioeconomic injustice as well as the legacy of medical, research, and public health injustice.

Given all these examples of how mistrust fuels misinformation, building trust should be a priority among health care professionals and researchers.

What We Know About Building Trust

As a part of the ABIM Foundation’s Building Trust initiative, many important insights about how trust functions and is built in health care are being uncovered. A survey commissioned from NORC at the University of Chicago (NORC), found that trust varies according to a variety of factors, including by position or context (clinician/patient, organizational, and community) and demographic characteristics such as age, income, race/ethnicity. We also found that perceptions of trust vary between patients and physicians. For example, while patients list lack of time spent with them or lack of listening as the main drivers of their mistrust, physicians report poor communication as the biggest driver of mistrust.

The pandemic has exacerbated the issue of lack of trust in health care, but perhaps not in the ways we might assume. The NORC survey results found that while patients did not report a change in their level of trust of their doctors, one in three physicians reported a decrease in their level of trust in the health care system and health care organization leadership during the pandemic, another important reminder that trust and mistrust are not experienced the same way for everyone.

Emerging methods to build trust in health care and health care research include efforts to diversify the workforce, center community voices, increase education and engagement, and prioritize and advance transparency.

Diversifying The Health Care And Research Workforce

Improving the diversity of the health care workforce is an intrinsically valuable effort for reasons beyond building trust, but there is evidence that a diverse workforce improves trust and health outcomes. For example, one recent study found that Black patients treated by Black physicians were more likely to agree to preventive services such as receiving a flu shot. Diversity in the research workforce fosters processes and practices that build trust and leads to better research. Consider the explosion of women’s health research spurred after more women joined the medical research field in the 1980s.

Centering Community Voices

People are more likely to trust those in their own community than strangers. Community can be defined in many ways, but the central issue here is a group that shares an important commonality—whether that be a neighborhood or a culture. This is true both in care delivery as well as in health care research. For example, a clinic in Iowa serving the LGBTQ community created a dedicated phone line and email managed by only two people who are trained to collect patient pronouns and preferred names. This may seem like a small step, but it helps affirm transgender or gender-fluid patients in a way that builds trust. While Community-Based Participatory Research traces its origins to Kurt Lewin more than 60 years ago, this paradigm of partnered research has been further developed to include patient-driven research in recent years, particularly with the establishment of the Patient-Centered Outcomes Research Institute. Emerging groups called patient-driven research communities are led by individuals with lived experience and for which a primary purpose is to enable research that is a priority to their communities. These groups are providing important guidance for researchers around critical issues such as creating mutual benefits for researchers and research participants and diversifying research governance, thus fostering trust between researchers and communities.

Increasing Education And Engagement

Education and engagement with both patients and physicians can improve trust and combat the spread of misinformation. In a recent JAMA Viewpoint article, the authors identified five types of misinformation that could affect the patient-clinician relationship and proposed strategies to address each type. For example, patient-facing groups such as Consumer Reports and the American Association of Retired Persons have been instrumental in educating members about trustworthy sources of information. Effective education is also critical for health care providers to ensure use of the most up-to-date evidence and to combat misinformation, particularly during times of rapidly evolving science as we have experienced during the pandemic.

One particularly novel method presented at the ABIM Foundation’s 2020 Forum on building trust and improving health equity was the use of virtual reality to simulate the experience of being Black as a way for users to develop more empathy. We believe this could help those who haven’t themselves been subjected to bias develop greater empathy for those who have, and possibly become more open to initiatives aimed at addressing bias.

Prioritizing And Advancing Transparency

Transparency is a bedrock attribute of trust, and practices that reflect full disclosure of information are important for good health care decision making and effective care delivery. Through an iterative series of trust-building conversations, a group of health system leaders in Wisconsin agreed to voluntarily submit patient-level billing and clinical data to create the first true population-based measure of diabetes process and control in 2004. The Wisconsin Collaborative for Healthcare Quality has steadily built on this foundation of trust by creating a robust data warehouse that stores granular information on more than 500 million patient encounters. Similarly, the AcademyHealth Paradigm Project examined strategies to promote open science, a broad set of principles and practices designed to increase the transparency and accessibility of research to, in turn, increase the quality, timeliness, and impact of research—all qualities that would lead to greater trust.

There Is More To Learn About How To Build Trust

While we have learned much about trust and how to build it in health care and research, there is still much more to learn. Last year, we convened researchers, clinicians, patients, and funders to develop a trust research agenda. The group identified a list of the top 10 research topics and questions across three levels of trust: clinician/patient, institutional, and community.

We have also recently launched the Research Community on Trust, a professional network for researchers and other stakeholders to collaborate and share information about promising research, practices, and policies to improve trust in our health care system. This community will be instrumental in compiling the knowledge base necessary to build trust and, at the same time, combat misinformation.

In summary, any comprehensive strategy to address misinformation will need to focus explicitly on building trust, the erosion of which is a major predisposing factor to the increase in people accepting and acting on misinformation.

Authors’ Note

This work is supported by funding from the ABIM Foundation.