Thoughts on Pew Research Center's Reports on Health Information and Influencers
Health Professionals Need To Convince More People to Like and Subscribe
In April and May, the Pew Research Center released two reports about the state of health information and who constitutes America’s health and wellness influencers. Looking at the data, it is hard to find the results surprising. After all, we know that health misinformation (unintentionally mistaken or incorrect information) and disinformation (intentionally fabricated or manipulated information) are rampant. What makes the reports sobering is recognizing that in the face of more challenging obstacles, health professionals have a never ending and increasing amount of work to do in order to educate and inform the public, especially as trust in science and medicine continue to decline.
In this post, I am going to share some interesting charts from the reports, what that means for healthcare professionals, and what we can possibly do about it. But first let’s see an example of why the source of our healthcare information matters.
Sometimes Even High Quality Journalism Can Be Overly Sensational
Even in the work of exceptional journalists, sometimes the headlines can be dramatic. A couple of weeks ago, one of my favorite podcasts, Plain English, released an episode called “The Most Exciting Month of Medical Breakthrough in Years.” Normally, I find the reporting, interviews, and tone of the podcast to be well-balanced and deliberate. But this time the host was compelled to celebrate three recent studies as stunning and groundbreaking, while quoting Vladimir Lenin: “There are decades where nothing happens; and there are weeks where decades happen.”
Normally, Plain English does a fantastic job when it comes to reporting science, technology, economics, and other data-driven stories, so I found this hype unusual. Forgive me for not immediately popping the champagne. Even the host’s guest cautioned restraint. Before we get into the Pew Research reports, I think it is important to quickly discuss the three studies from the podcast just so the layperson can have a basic understanding about the variety of questions scientists and doctors ask themselves when evaluating current health news.
For deeper understanding of how to read a scientific paper, you can check out these resources here, here, here, here, and/or here.
You can listen to the podcast to form your own opinion, but the three findings were:
A new pancreatic cancer drug, daraxonrasib, doubled median overall survival time from 6.6 months to a clinically significant 13.2 months. I get the excitement because the news was met with a standing ovation from a room full of experts at the American Society of Clinical Oncology meeting on May 31.
But my inner realist can’t help but note that when it comes to pancreatic cancer, which has poor outcomes because of our general inability to detect it early, and in a field such as oncology, which is often fighting an uphill battle, any good news might be welcomed ecstatically. But unlike the general public and media, I am sure these oncologists and the patients’ other doctors are already asking themselves how much meaningful quality of life at the end of life will these patients have in the extra six months gained. They are also contending with how much financial, emotional, and psychological cost the patients and their families might face if this merely extends a patient’s suffering.
A preliminary study in the New England Journal of Medicine of only 35 patients showed that a single infusion of a gene-editing drug at the highest dose reduced LDL cholesterol levels by as much as 62 percent; the changes were sustained for at least 18 months. Basically the gene editing molecule, CRISPR, enters liver cells and finds a gene called PCSK9 and replaces a single DNA letter. This prevents the creation of a PCSK9 protein, which normally binds to LDL receptors on the surface of cells, marking them for destruction. If the LDL receptor is destroyed, it cannot take up LDL molecules circulating in the blood stream. But if you can block the creating of the PCSK9 protein, it cannot destroy the LDL receptor. So the LDL receptor can bind to more LDL molecules, reducing levels in the blood.
Once again, this sounds great. But it was a preliminary study, it only looked at 35 patients, and there are still so many unanswered questions like what are the downstream effects of manipulating this section of a patient’s genome? Will it lead to unforeseen problems in 5 or 10 or 20 years? The body is an integrated, complex system. Small changes can lead to dramatic transformations over time so we are better off being extremely cautious when manipulating the literal code and blueprint of life.
Currently, PCSK9 inhibitors exist as injections that must be taken every few months. They have a favorable safety profile and are well tolerated, which may be a good sign for gene therapy.
But we must also consider the obvious question: what is the cost of the gene therapy (hint: multiple millions of dollars) and will it be available to everyone? Will insurance companies pay for it? The FDA has already approved the CASGEVY, a CRISPR-based gene therapy to cure sickle cell disease, but we have yet to see that treatment hit the market in a widespread and affordable way.
An experimental injection of a drug called retatrutide, a GLP-1, which affects three hormones that affect energy levels, appetite, and metabolism. Earlier versions of GLP-1 drugs affect one hormone (e.g. semaglutide [Ozempic]) or two hormones (e.g. tirzepatide [Zepbound]).
In a study released by The Lancet, the drug manufacturer, Eli Lilly, reported that the results were basically on par with those seen in bariatric surgery with the average participant losing 28 percent of their body weight in 80 weeks. Further, 11 percent of participants who took the highest dose dropped out of the study due to side effects. In other words, while encouraging, we still more testing in order to separate hype from reality.
So I hope it is apparent that unless you have trained in or spend your days reading and critiquing studies, it is very easy to get carried away with reported statistics, especially when the results confirm news we are emotionally invested in (Saving lives! Improving cancer mortality! Treating hyperlipidemia! Eliminating obesity!). If even a well-respected and measured journalist can get carried away with new reports and studies, can’t any of us (health professionals included)?
In the end, when you consider the cost of bringing new drugs to market, the time it takes to obtain regulatory approval, and all the experimental design flaws in research studies, a tempered attitude is always preferred over an overly cynical or optimistic one.
Anyway, thanks for humoring this important tangent. Now let’s look at the Pew Research Center reports.
Source of Health Information and Levels of Trust
The graphics are from the Pew Research Center. Take some time to look through them and form your own opinion (that’s how you exercise your ability to read and understand scientific papers!). Here is what I am taking away:
Most people get their health information often or sometimes from health care professionals (86%), while roughly 35% get it from social media, and 22% get it from AI chatbots. I suspect that with time, the numbers from social media and AI will increase while sources like major health information websites (e.g. WebMD), news organizations, and government health agencies will decrease. It is still remarkable to me how little trust people have in government health agencies.
Healthcare providers are still considered one of the highest quality sources of health information when it comes to ease of understanding, convenience, personalization, and accuracy. But we should recognize that while only 7% of people believe social media is accurate, 30% believe that it is easy to understand, which is higher than government health agencies and news organizations. Only 13% believe that new organizations provide accurate health information! Meanwhile, AI chatbots are already perceived as higher quality health information than social media.
Half of Americans have a hard time figuring out if health information is accurate. Looking at the chart, you’ll see that even among people who are educated and upper income, 50% of those with a college education believe that it is at least somewhat difficult to judge accuracy of health information while 44% of those who are upper income feel the same. This is terrible. Imagine if you are part of a lower income or education bracket? Health information is not being formatted ot reach you. This is only going to get worse as AI and social media slop spread, as AI worsens our ability to learn, as social media destroys our attention spans, and as the government continues to dismantle our national scientific research and educational infrastructure.
The uninsured, young adults, women, and lower income brackets are more likely to get information from social media and AI chatbots. This makes sense as those with a higher barrier of entry into the the healthcare system are more likely to search for alternate ways to treat manage their personal health and wellness. This is potentially foreshadowing a sad future where those with resources will be treated by an actual human while the rest will be meeting with an AI robot or avatar. Human interaction, like live performance, will be a premium luxury.
Who are America’s Health and Wellness Influencers?
The graphics are from the Pew Research Center. Here is what I am taking away:
Almost half of adults under 50 get information from health and wellness influencers. 20% of the health influencers have more than 500 thousand followers. These influencers are a mix of health professionals (41%), coaches (31%), entrepreneurs (28%), authors (11%), and even those with no credentials (16%). When you consider that the first Pew Research Center report said that only 7% believe social media is accurate, there is a lot of people consuming suspect information.
Remember the 41% of health and wellness influencers that are health professionals, only one-third of that group, or 17% overall represent conventional medicine. Other health professionals include allied health (pharmacists and physical therapists), alternative medicine practitioners, nutritionists, and mental health providers. In other words, there are bound to be gaps, loss of nuance, and falsehoods mixed into the health and wellness messaging.
A major reason (41%) that people get information from health and wellness influencers is because they want to make a health or lifestyle change. But tucked into that chart is the idea that 48% of people cite as a major or minor reason that they seek out content from influencers because they want to learn about things they don’t want to ask their doctor about! This points to a major mistrust that patients have with their doctors. The relationship between physician and patient is supposed to be sacred, confidential, and safe. Clearly, patients do not see it that way and it is up to health care professionals to adapt and rebuild the trust.
People primarily seek out wellness influencers to learn about fitness, weight loss, and beauty. To be frank, the influencers may be better examples of preventative medicine than health professionals only because most physicians and health care professionals that I know are not fit, do not always eat healthy, and are not practicing what they preach. Of course, physicians are overworked, and balancing the demands of working in healthcare with life are not easy on body or mind. But putting your body through the rigors of building muscle, abstaining from processed foods, and sustaining healthy habits would go a long way in giving some health professionals perspective on how hard it is to do what we ask our patients to do.
So What Does This Mean and What Do We Do?
Looking at these two surveys, it is apparent that while most people still rely on healthcare professionals for health information and education, a decent number get it from health and wellness influencers and AI chatbots, even if they consider it inaccurate. Half of college-educated people have a hard time judging the accuracy of health information and underserved populations (women, uninsured, lower income) are more likely to rely on social media and AI chatbots than those with better access to the healthcare system.
Further, health and wellness influencers are a diverse group; less than 20% represent conventional medicine. Many people seek advice from social media influencers because they are either uncomfortable with, do not trust, or do not feel that their doctor can address their concerns. Finally, people are primarily focused on learning about fitness, weight loss, and beauty when they seek out influencers.
Ultimately, people are looking to improve their health, they are seeking out information, yet they are having a hard time separating fact from fiction. There are a lot of competing voices and the noise-to-signal ratio is only increasing. It turns out that 58% of traffic on the Internet is bot-driven. Further, more than 50% of new articles on the Internet are now AI-generated. We are drowning in slop, and since AI is trained from the Internet, it will be increasingly learning from itself, potentially increasing the likelihood for errors.
It has come to a point where healthcare professionals, medical schools, hospitals, clinics, and governments must start producing their own content and developing their own health messaging.
Individually, healthcare professionals need to practice what we preach. If we are unhealthy then it is not hard for us to lose credibility. As Gandhi said, “Be the change you want to see in the world.” Trying to build muscle when healthy will give you a more nuanced perspective on our expectations of patients suffering from ICU weakness.
Primary care offices and specialty clinics need to start sharing their stories, teaching their patients, and reaching out to the public in ways that inform and guide them on a hyperlocal level.
Hospitals must enhance how they reach out to their communities. They should hold local public health education seminars and health and wellness fairs. Create fancy TED talk-like events and elevate your staff as thought leaders.
Medical schools must start educating their students about misinformation and how to combat it. Future (and current) physicians must be taught how to create online educational messaging to reach their patients at their level.
Medical journals cannot hide valuable knowledge and research behind paywalls that are too expensive for the general public. While news organizations may be able to report on the latest research, the data shows that people don’t trust news organizations. Perhaps medical journals can generate their own summaries for the public. For example, the New England Journal of Medicine started to publish public health alerts in an attempt to make up for the gap left by the CDC’s Morbidity and Mortality Weekly Report after the current administration made its alerts less reliable.
Governments need to win back the trust of citizens. Perhaps it means partnering with influencers or elevating the voices of local healthcare professionals. But they need to show an active interest and initiative in making their constituents healthier. For example, Medellin hosts a Ciclovia and closes major roads for a few hours once a week to encourage their citizens to get outside and exercise.
Unfortunately, health and wellness information will only become increasingly harder to parse and evaluate as time goes on. Unless the medical community takes an active role in educating our patients and rebutting the misinformation, our patients will continue to suffer. But the good news is that people are interested and receptive to improving their health. We just have to reach them where they are at.
Thanks for getting this far. As a bonus, here’s the other image i considered for this post:
