by Lisa Fitzpatrick, MD
The COVID-19 pandemic is highlighting our failures to communicate health and scientific information in plain language. These failures have further eroded trust in research, public health, and the medical establishment, particularly among people I serve in underserved communities. But there is a silver lining: People are paying attention and are hungrier than ever for understandable and usable health information. They want our support to improve their health literacy. However, the pandemic has taught me why we must do better.
My experiences walking the streets and hosting ”Ask the Doctor” sessions to answer questions about coronavirus and COVID-19 have taught me that, despite our efforts to improve health literacy and share information during the pandemic, people feel confused and disconnected from our messages. A question during one of the Ask the Doc sessions was, “If my COVID test was negative, why would I need to get that vaccine?” Soon after I was asked, “Everybody is talking about COVID but whatever happened to the coronavirus we were supposed to be so afraid of?”
Questions like these are abundant. They illustrate how, despite our efforts to improve health literacy, we simply are not doing enough to provide the community with understandable health information. The pandemic has taught me a few lessons that will intensify my efforts to improve health literacy, particularly in underserved communities. First, the grapevine is still among the most trusted sources of health information. An abundance of research has captured community sentiment about trusted health messengers and health care providers, like doctors and nurses, who are often reported as most trusted. Among people I have spoken to, many of whom do not have an established primary care provider, they get trusted health information through friends and family or other people they know. When I asked a community member how she decides if health information is trustworthy, she said she decides how likable the person is and if the person sounds credible. If the person is popular, credibility soars, despite the fact that they are sharing misinformation. Second, and related to likeability, we are losing the health information war to social media. The woman who told me about likeability said her viewpoint also extends to social media. The more likes or followers a person has indicates to her their trustworthiness and credibility. For example, a quick search on Instagram, where many obtain COVID-19 health information, shows the disparity in followers:
Compare these with the disinformation dozen (research published by the Center for Countering Digital Hate) with 6 million followers, and entertainers who spread COVID-19 disinformation like Nicki Minaj with over 100 million. Whether we like it or not, we cannot compete unless we are in these spaces countering misinformation and increasing baseline health literacy.
Third, we must acknowledge just how much trusted messengers matter. I have encountered many people who refused COVID-19 vaccination until someone close to them was vaccinated and convinced them. Identifying and matching trusted health messengers with the right communities can be an achingly slow process, and can feel counterintuitive to our approach to many things in policy and academia. Are we willing to shift our priorities and strategies to truly meet people where they are? Finally, we must do more to ensure health literacy research and policy connect with the community. Over a year ago someone asked me if I thought he should worry about coronavirus. I was dismissive and believed historical public health expertise, organizational leadership, and long-established processes for mitigating the spread of infectious diseases would wrap up the outbreak swiftly and with little consequence. I was naïve and did not appreciate the impact of the public's skepticism and cynicism about research and the scientific process. Millions have fallen prey to misinformation and have become vulnerable to the influence of politicians and non-scientific influencers. The result is a US pandemic with an embarrassingly high death toll and no end in sight. Our failure pre-pandemic, and even now, to make ourselves relevant by ensuring our work and our voices reach the community is more evident than ever. In hindsight, we were defeated before we began because we were not prepared to combat misinformation with the force of the trusted, understandable information needed to soften the blow. As I reflect on the last 18 months and all the missed opportunities I failed to seize, I know I--we--can better support the public to understand data, science, and health information. Let this be our call to action to ensure our policy reports, manuscripts, and presentations about health literacy make their way from screens and shelves practically into the hands of those who need it. But it's not too late. A Chinese proverb says, “The best time to plant a tree is 20 years ago, the second-best time is now.” And so it is with the lessons I’ve learned about addressing health literacy and misinformation during this pandemic.
About the Author
Dr. Lisa Fitzpatrick is the CEO and founder of Grapevine Health, a health literacy and patient engagement organization working to improve health communication in Black and brown communities. An infectious diseases physician and CDC-trained medical epidemiologist, Lisa is a member of the National Academy of Sciences Roundtable on Health Literacy and a professorial lecturer for the George Washington University Milken Institute School of Public Health in the Department of Epidemiology and Biostatistics.