As we approach the 1-year mark since the Coronavirus entered the United States, many of us are perplexed by the stubborn spread of the virus after all this time. Misinformation has spread nearly as fast as the virus, leaving the population with contradicting thoughts and opinions regarding COVID-19 and health issues in general, and therefore, contributing to rising case numbers. Health literacy, the ability to obtain and understand healthcare information in order to make appropriate health decisions, is crucial during this crisis as it directly affects the decisions we make.
Not only is health literacy necessary, but it is also important to recognize the sources from which people acquire their health literature. We conducted a study to learn more about health literacy and the sources people consume. One of the discoveries we made was that most people get their knowledge from their primary care doctor and completely trust them in providing accurate health information. However, a number of people also obtain and trust health information from the news and social media. With news becoming increasingly sensationalized and social media algorithms putting individuals in echo chambers, much of the consumed information can seem factual and trustworthy, but in reality, can spread dangerous misinformation and disinformation.
To dive more into health literacy, sources, and misinformation from a broad lens, we once again sat down with Eileen Fry-Bowers, PhD, JD, RN, CPNP, FAAN. Dr. Fry-Bowers is an associate provost for research administration and associate professor at the University of San Diego and is well-versed in these topics.
Balbina De La Garza, GroupSolver: We recently ran a study to understand the general population’s health literacy. One of the questions we asked was about where people get their health information from. I am not surprised that a majority get their information from doctors and nurses, but I did notice a number of folks who get information from the news or social media. Right of the bat what jumped out to me was that 18% stated that a source of information for them is social media, and 17% said nurses. Those numbers are very close! Is this data concerning?
Eileen Fry-Bowers, University of San Diego: I don’t think this is surprising to me. We need to think about how the health system works in general. For some people, being able to get ahold of their primary care provider to ask them a question is not easy. Other people may not be able to take the time to send an email or message to get information from their provider. But also, we need to think about people’s access to healthcare more generally, such as whether or not they have insurance or is their provider accessible online? So, for myself, if I have a health question, I can email my primary care provider and she will provide me with a response in a day or so. I am a healthcare professional, so I am educated in how to access the healthcare system and what questions to ask. But the general public doesn’t necessarily have that knowledge on how to access healthcare professionals in this manner.
Secondly, a lot of folks wouldn’t think to contact their healthcare professionals for general health questions. Some may think that they will only see them for a specific complaint. It may be a lot easier for them to go to social media for answers to these kinds of questions. Also, a lot of patients who don’t have insurance or aren’t tech savvy would not be able to communicate a provider electronically either. So, social media fills in that gap for a lot of people.
With regards to your point about social media and nurses, the public sees nurses in a lot of different ways. Oftentimes when the public thinks about nurses, they are thinking about the person in the hospital taking care of patients. They are not necessarily thinking about the nurse at the county public health department or their school or at a clinic. They are not always thinking about them as potential sources of information. And that needs to change!
Rasto Ivanic, GroupSolver: Even if it is only 20% of people who rely on social media and they trust what they hear on social media, that makes social media a player and we absolutely have to make sure that information gets through the channel. And that information needs to be trustworthy and accessible. How could this be done?
EFB: I’m so glad you brought up that reliance on social media because it brings up a couple of points that we really need to pay attention to and that is this idea of the quality or character of information that is being shared on social media. Social media can be a great source of accurate information, but it is also a source of misinformation and disinformation. Misinformation is just incorrect information but the people putting it out there may not realize that it is incorrect. There are, however, concerted efforts by different entities to put out disinformation, or incorrect information, to instill doubt for certain things. I think we do see that particularly related to vaccines when there is an intentional effort to put out information that is not accurate in regards to the safety and efficacy of vaccines. And this is not just for the Covid vaccine.
We really need to have a serious conversation about what is the role of social media. Social media can certainly be leveraged to educate large populations of individuals. But when that information that is being promulgated potentially creates harm either through misinformation or disinformation, we need to step back and have a conversation about that. I think that conversation is starting to happen in the broader world of social media about general issues, but we need to be thinking about it from a health perspective as well.
RI: Is there a way for something like the FDA to take on a new role ensuring the quality of information? We have labels for drugs that go through a long process, and advertisements are tightly regulated. But information on social media is not. Is there a case to be made similar to how we protect ourselves from certain foods and drugs?
EFB: I think we have to start having these conversations. It implicates our legal experts. Right now, our social media companies are private entities. There are a lot of legal and economic considerations that need to be addressed. Given the fact that real harm can occur through false health information, we really have to be thinking about how we monitor that.
If the healthcare sector and government sector are better at how we communicate from the beginning, then the public is most likely to trust us as a good source of information. People create rumors or spread false information when there is an information vacuum. There is uncertainty and fear, so they try to fill that vacuum with whatever they are hearing. They are thinking, “I am not getting this information from my provider, so where else can I get this information?” Social media is ubiquitous. If healthcare providers provide clear and direct information, I think we can help slow down the spread of misinformation.
RI: The advantage of social media is two-fold. It is much easier to Google something right on the spot than to contact a doctor. You get immediate responses. And social media talks to you. I think the number of those who get information from social media is actually greater than 18%, but they know better or just ignore it. Does a hospital or health system need to create a new job role for somebody with a med school background to be a social media manager so they can create a positive flow of information online? Something that will allow health professionals to be more proactive in social media conversations?
EFB: I think that is an interesting idea! There actually is a whole Twitter hashtag (#nursetwitter) where nurses are sharing valid health information. I think there is value in that. I believe hospitals and healthcare systems would benefit from that kind of direct communication with their patient and consumer populations. I do think there are some systems that are doing that, but it is not a norm. Having a social media presence is a great way to ensure that accurate information is out there.
BD: Similar to the last question, I was curious to hear your thoughts about whether or not social media companies should have a health expert—someone like Dr. Fauci—advise them and help flag inaccurate content. I know Twitter has flagged and removed some tweets spreading misinformation, but should there be a stronger effort against false health-related information?
EFB: That’s another legal question! I know there is a lot of discussion today about repealing Section 230 that affects the liability for social media companies. That’s part of that larger conversation. Personally, I’d say that if these companies want to be good citizens, it is an appropriate action to take [to have a health expert flag content]. I think it is the right thing to do to flag false information that can place people at risk. Not everyone has the background to accurately assess whether or not the information being shared is factual.
RI: Going beyond social media and their responsibilities, in the broader sense, those such as doctors and nurses with the power of information, what have they learned this year of living through a pandemic? What did we learn that we didn’t think we would need? Physicians, nurses and hospitals have earned a lot of credit from the nation right now. How do we use that momentum?
EFB: While we have been experiencing a pandemic, what has really become apparent is how truly broken our healthcare system is. Many of the things we are seeing through the pandemic such as incredible disparities and inequities have been there pre-pandemic. Covid just amplified all of those problems. We should be at a moment in time where we start to think of a new way of doing things that works for everyone. We should go back and fix systems instead of putting band-aids over them. How can we leverage public health and healthcare systems to work better to ensure equitable health access for all?
RI: I would also say our healthcare system is not agile. Think about how long we’ve been talking about electronic health records and doctor visits. It has taken us years to implement and we are still not where we need to be. Do you think it has sunk in our minds that the difference between an agile and equitable system versus molasses-slow, K-shaped system results in hundreds of thousands of avoidable deaths! This is a lot of lives lost. Will it sink in?
EFB: This goes back to our previous conversation about numeracy: people’s ability to understand numbers. For a lot of people, 400,000 lives is such a big number that it is hard to see that. We need to talk about it as “400,000 is equivalent to the population of X city” or “400,000 is equivalent to X many plane crashes”. Otherwise, I think the number is so nebulous that it is hard for people to conceptualize. There are also some communities who have not been as affected, so they don’t see how deeply this has affected others.
To your point about being agile, for years we have tried to develop Telemedicine. And yet that happened overnight with Covid! We have that capability, it’s whether or not we have the will. Another thing we’ve seen is better utilization of our advanced practice providers. Utilizing workforces, such as a nurse practitioner workforce and a physician assistant workforce in ways to expand and increase access to care, was needed due to a shortage of providers and resources. We had a number of states remove burdensome requirements through executive or administrative action that didn’t serve legitimate purposes. Now we have people providing care and increasing access to the health care system. We really need to think of those artificial barriers that have been in place. In some cases, the solutions are all in a stroke of a pen.