Throughout the pandemic, most of my work has involved listening to the community—-on the street, virtually during Ask the Doc sessions, on Clubhouse, through hearsay and even reading text messages. Most recently, a mother sitting in a clinic waiting for her son’s vaccination texted me for reassurance that she was making the right decision to have him vaccinated. Encounters like this provide instructive and humbling insights about how and why, despite nearly two years of multi-media communication campaigns and messaging, efforts to communicate complex health information are failing. Stories and observations from our community outreach can guide us toward more responsive and relevant health communication strategies for the community.
The scientific community missed a once-in-a-generation opportunity to build trust and communicate the global relevance of science and research. We have arrived at a moment in which the world is now more attuned to health, science and medicine than ever before. But our health communication failures have deeply eroded trust in science, scientists and health policymakers. Conflicting expert opinions and evolving information with inadequate explanations have led to doubt and distrust in the community. For example, we heard CDC masking and social distancing recommendations were perceived as arbitrary rather than based on scientifically credible information. Last year when I asked a group about sources of trusted health information, a woman spoke derisively about CDC shifting the social distancing policy from “six to three feet overnight.” Her comment reflects community perspectives on what feels like sudden and baseless policy decisions by decision-makers and how effective communication is not reaching the community. Consequently, people are tuning out.
The feedback from the community also suggests a need for humility in communicating science. Although epidemiology is rooted in data, we have failed to help people understand that science is not always exact and that this does not preclude our ability to devise and implement credible policies and recommendations. Several people have related their disinterest in the graphical presentation of pandemic data. This approach is impactful for academics but often woefully inadequate to reach the community.
People crave access to trusted health information and in its absence, rely on the grapevine and social media. When I am out on the street having casual conversations, people freely share their sources of health information. The two most common sources appear to be grandmothers, meaning someone senior to them, and ‘they,’ as in “‘they’ say the vaccines are tracking you.” The identification of ‘they’ is often elusive, but probing concludes that both are proxies for hearsay.
A young man who was vaccinated at his grandmother’s insistence had not heard of the Omicron variant. He admitted to never watching or reading news and relied solely on Instagram, YouTube and his grandmother for his health information. Many others had also not heard about Omicron, and when asked about sources of trusted health information, they cited social media and YouTube. It is not surprising that people lost amidst a sea of conflicting health information will turn to personal, relatable and informal but trusted sources of information.
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As for how people decide whose word is trustworthy, for many, it is about ‘likes.’ One woman said, “We go with whoever sounds like they know what they are talking about, and if it makes sense to me, I will go with them.” These reactions suggest that in addition to traditional channels, we must also deliver science and health information through non-traditional media channels like social media and trusted community messengers.
People are often deeply confused by science and its processes and do their best to assimilate complex health and scientific information. During an Ask the Doctor session a woman asked, “Why do I need to be vaccinated if my Covid test was negative?” The question and countless others like it provide insight into how our health communication is not effectively reaching or educating many communities about the basics of science, research and medicine.
Therefore, we must deliver health information that is nuanced and tailored by context to help people understand the ‘how’ and ‘why’ of science and medicine. Often I have described vaccine mechanisms as a club bouncer deflecting an unwanted patron or a dress rehearsal preparing for the actual event. In responding to a question about breakthrough infections, I recently watched another scientist describe Covid vaccines as a bulletproof vest protecting from severe injury rather than contact with a bullet. His analogy strongly resonated with the audience and led to additional discussion and even a few people accepting vaccination.
Finally, because health communicators too often take the listener’s knowledge for granted, people express a need to conduct their “own research.” This process requires sifting through online medical and scientific jargon, leaving them to draw conclusions that may be incorrect. A man who told me he does his own research described his process as google first, followed by reading abstracts from Medline searches and consulting an online medical dictionary for words he does not understand. Afterward, he socializes his conclusions among people he believes are more intelligent than he is. His health decisions are ultimately based upon whatever seems most logical for him. His process conjured images of a courtroom with lawyers battling for the jury’s attention. It validates the need for delivery of credible health information that is more relatable, simplified and jargon-free.
Covid information fatigue is increasing and attention is reverting to non-Covid health conditions and social issues. A few weeks ago, when I was on the street, I approached a woman to ask her about Covid vaccinations, and she responded, “No thanks. I am tired of talking about Covid. Can you help me with housing?” Many others have avoided questions about Covid and pivoted to obtain convenient, non-judgmental information to better understand if they should worry about a symptom, ask ‘why’ or get intel about their medical conditions. One man walked by uninterested in a Covid-related conversation and a few seconds later returned to ask if we could help him find a good orthopedic surgeon. On another day, a woman hospitalized with pulmonary embolism was discharged and immediately approached me on the street to review her discharge paperwork. She asked for help to understand her next steps.
More than ever before, there is a glaring need to address the community’s health information and social support needs, especially the vulnerable. Covid news may be predominating on the airwaves but as interest in Covid information fades, our outreach shows us people struggle with health and social issues pre-dating the pandemic, only with fewer and less accessible health support and resources.
How can we respond to this information?
We are losing misinformation and disinformation wars and leaving the community vulnerable to misinformation. This is partially because credible science messengers are not as abundant and relentless as purveyors of misinformation in conveying health information through non-traditional or new media information channels. But also because we do not consistently dialogue with communities to understand their fears, concerns and misperceptions about science.
Therefore, we must commit to adapting our health communication strategies to align with longstanding and urgent community health information and engagement needs. We can start by consistently listening to the community to deeply understand the experiences that inform their beliefs and acceptance or rejection of credible health information. The more we understand how and why we fail to deliver impactful health and science information, the better we can respond.
To more effectively reach the community with credible, data-driven health information, we must disrupt the culture of judgment and bias against communicating through more relatable and engaging strategies. I am talking to myself as much as anyone. Those of us professionally reared in academia and national policy environments are steeped in a culture and process that creates barriers to delivering relatable and engaging communication. In a crisis, academia drives health information delivery. Academics and policymakers often speak in jargon void of concrete, actionable information and generally talk to each other rather than the community. In addition, although many people, particularly in underserved communities, rely on social and digital media engagement for health information, these information sources are generally viewed as less credible and authoritative as if educating and engaging through these channels is beneath us.
We have to change this and bridge communication gaps between scientists, policymakers and the community. This includes showing up in the community with authenticity, humility, openness and humanity. We can do this directly or through partnerships. Either way, unless we heed these lessons, when the next pandemic happens upon us, the trust deficit will remain, and we will see we have made no progress at all.