During his final weeks as the director of the NIH, Francis Collins, MD, PhD, proposed an important new project: studying health communication. After watching the profound communication failures during the pandemic, it was finally time for the NIH to invest in fixing this problem — to study where communication breaks down between the medical community and the public, and how to make it better.
I was in my last year of medical school at the time. Between clinics and residency interviews, I volunteered my free time addressing science rumors online and teaching people to recognize logical fallacies that may trick them into believing false information.
The year before, I had finished my PhD studying the microbiome, which gave me the skills to dig into the literature and analyze and communicate data. But I knew the microbiome wasn’t the topic I wanted to study long-term. I was asked, “What do you want to research?” during nearly every residency interview. And the honest answer was “I don’t know.”
“Health communications research” is a nascent field and wasn’t on my radar at the time. But Collin’s announcement changed that.
In the following months, a new NIH initiative was launched: Advancing Health Communication Science and Practice, which was anticipated to fund more than $150 million in health communication research over the next several years.
But now, it seems the project has been killed. This is an awful mistake.
Academic researchers, unfortunately, can’t study whatever we want. Not only do we have to find topics that are interesting and worthwhile, but we also must find topics that will be funded. While “funding” has become misunderstood during the pandemic, the simple reality is this: scientific research costs millions of dollars, and unless a researcher is independently wealthy, they must find someone else to pay for it.
In the world of medicine, most funding comes from the NIH. They set priorities and decide which research topics they will fund (research on cancer, diabetes, the opioid epidemic, etc.). Scientists in those fields apply for NIH grants, and the lucky few get money to pay for the staff, equipment, data storage, and the many other costs required to perform high quality research.
What if you have a great idea but can’t get a grant for it? Most often, those projects go nowhere.
For decades, most NIH funded-research has focused on studying human diseases, leading to breakthroughs in our understanding of what causes diseases and how to treat them.
But funding for research on health communication — improving what people understand about their own diseases — has been miniscule.
It seemed like the pandemic was going to change that. If there was one bipartisan sentiment that came out of the pandemic, it was this: the communication was terrible. There were so many messengers, often stating conflicting information, and many people didn’t know who to trust. Confusion over simple words (what does it mean to say a vaccine “works?”) led to doctors saying one thing and the public hearing something entirely different. People were confused, frustrated, and angry, and trust in doctors and scientists dwindled.
Finally, leaders in the scientific community were recognizing how important health communication is — that all our medical advances mean nothing if patients don’t understand or trust them. Maybe now we would have the resources to finally fix it. The Advancing Health Communication Science and Practice initiative was a first step in the right direction.
But now, the initiative has been put on pause, many fearing it has been killed. While the exact reasons for this change are unclear, some officials believe this decision was made in response to political pressures over studying misinformation.
The fear of funding health communications research seems to stem, in part, from the fear that information will be over-regulated online — leading to censorship and manipulation of information streams and allowing social media companies to become “arbiters of truth.”
It doesn’t have to be this way. Rather than play whack-a-mole with fake news and asking social media companies to decide what’s true, what if we study how to teach people to be more savvy consumers of information? What if we study how to train people to recognize logical fallacies, misleading statistics, and cherry-picked anecdotes for themselves? What if we study where and why communication breaks down between doctors and the public, and how we can make it better? What if we invest in training scientists and doctors to be better communicators?
The goal of health communications research should be to empower the public to make informed health decisions for themselves, to teach them to be critical consumers of health information, and to train doctors and scientists how to help them on this journey. It is much better to teach people to tell fact from fiction than to try to chase down all the fiction on the internet.
“I don’t know what to believe.” During the pandemic, I heard this over and over again. Kind, earnest people were seeking reliable information about their health and were lost in a sea of conflicting answers. And it continues to happen beyond COVID — conflicting information about everything from what food is healthy to how to lose weight to what is and isn’t good for “immunity” still abounds.
We can and must do better. There are young researchers like me who want to help solve this problem. But we know our hands will be tied behind our backs without the funding to do it.
Kristen Panthagani, MD, PhD, is an emergency resident physician and Yale Emergency Scholar at Yale School of Medicine and author of the medical blog You Can Know Things.