Vaccines have long been the center of controversy and the Covid-19 vaccine is no exception. Fears of side effects and unknown risks loom over people’s heads as they struggle to determine, should I get the vaccine when it is available or wait a while? We expect people to make a good decision for their own health and for the safety of others with information presented, but sometimes that information is not communicated effectively. A lot of this is related to the messaging related to vaccines, as discussed last time. But health literacy also is a major player here. If people are unable to fully understand the concepts and information, how can we expect them to make a decision? With less than 50% of people having an adequate level of health literacy, this is an issue we need to prioritize as we enter into the new stage of the pandemic.

Once again, we had the pleasure of sitting down with Eileen Fry-Bowers, PhD, JD, RN, CPNP, FAAN, to discuss the topic of health literacy as we await the distribution of a Covid-19 vaccine.

Balbina De La Garza, GroupSolver: Something that I noticed when looking over the new data, and even through conversations throughout the years, is this idea of “side effects” and “unknown risks” when talking about vaccines. I am curious to know how valid of a reason it is to not get a vaccine or certain procedure based on the idea of the unknown effects or risks? Are there that many risks in getting vaccines?

Eileen Fry-Bowers, University of San Diego: To answer that question we need to back up a little bit and talk more in general about risks to health and risks associated with getting healthcare—anything from taking Tylenol to getting vaccines can have some amount of risk associated with it. Part of assessing risk is being able to understand the health information presented and then use it to make decisions. This is known as health literacy. Health literacy is having the cognitive ability to take in and understand information about healthcare and health-related topics, and then use that information to make decisions about one’s care such as taking certain medications. Health literacy depends on someone’s own general literacy or reading ability and also numeracy, or ability to understand and use numbers. If you have a lower level of health literacy, your ability to use information and assess risk is limited. If you have a limited ability to assess risk, it makes it much more difficult to have conversations about topics such as side effects, especially with treatments like vaccines. 

There are few things in healthcare that don’t have side effects. If you’ve ever seen a TV commercial for a prescription medication, you’ll hear a whole list of side effects and some are very scary! But people will still ask their provider for that medication and hopefully their healthcare providers are having conversations with them about whether or not that medication is right for them. We have to have similar conversations about vaccines. It’s a matter of quantifying that risk and determining the potential of the side effects and compare it to the benefits of a vaccine. And not just the benefits for the individual, but for the population as well. This is where we get into the concept of herd immunity. So yes, side effects, mostly minor, exist with vaccines, but sometimes those side effects can be easily managed. 

BD: You brought up the point of how Tylenol has a long list of side effects. Why do you think people are more comfortable in taking a “risk” for a medication like Tylenol but not vaccines?

EFB: This goes back to the conversation we had last time and that is that vaccines themselves are this unique health intervention that a lot of folks really don’t understand. It is easier to understand some medications. For example, you have a headache, so you take Tylenol and then after a while you feel better. You get an immediate response. But vaccines are instead a preventative health measure. It’s hard to know when an illness has been prevented, when you’ve been exposed to something but you didn’t get sick because you were immune due to vaccination.

Right now, we don’t particularly know how some people will react to Covid. We have evidence  that certain groups are more vulnerable than others and have a worse experience, but that isn’t always the case. We still don’t fully understand why an 80-year-old may survive Covid, and why a 35-year-old will end up in the ICU and die from it. Vaccination is a preventative effort. With Covid, we want to ensure that someone doesn’t get the disease because we don’t know how they will respond to it. There’s a risk that they can get quite ill. We balance the risk of a poor outcome of the disease against the risk of vaccination.

The immune system is a very complicated system. Going back to the idea of health literacy, a lot of individuals don’t always understand how vaccines work in the body. Many times, they interpret some of the side effects as bad or negative things when in fact they may be reassuring that your body is responding to the vaccine from an immunological perspective in the way it should. 

Rasto Ivanic, GroupSolver: What is the state of health literacy in this country? That seems to be the underlying question here. 

EFB: It is actually pretty low. Less than 50% of people have an adequate level of health literacy in order to take healthcare information and make decisions. We have a very significant number of folks who have a less than proficient level of health literacy. And then we have a big chunk of people, 20-30% who have a low level of health literacy.

RI: What does that mean?

EFB: It means that a lot of people are getting healthcare information, but they don’t know how to use it. We, as healthcare providers, are not providing that information in a way that people can take in and use. Whether it’s in the words we use, or maybe they don’t have  foundational knowledge to begin with. If we don’t do a better job of providing people with information to help them understand so that they can take action to improve their health, people will not be able to do what we ask them to do.

RI: Is it even possible to present messages in a way to help people understand this information and make informed decisions if they don’t have the foundational knowledge on how immunity works? Are we in a position that if we have not achieved health literacy by the time someone graduates high school, we now need someone like the president saying, “everyone has to take this vaccine”?

EFB: I think you have a point in thinking: How do we take something so complicated and boil it down to a way where people can make better informed decisions? I think what you do in your infographics is a great example of how we can do that. A lot of tools that we use to help boil down complex information include pictures and short phrases. We also recognize that sometimes we cannot give every piece of information all at once. Sometimes it should be a little bit at a time. It’s like giving medication in small dosages. To your point about the vaccine, one of the problems is that all of this information doesn’t just come from one individual like a healthcare provider. We are getting information from the news, social media, friends, and family. And a lot of that information has not been vetted and is being presented in ways that are not clear as needed, or even correct, and allows for misinterpretation or the spread of misinformation

In order to take very complicated information and translate it into a usable fashion, we need to have one clear, consistent message delivered by trusted individuals. And it is very important to remember that who that trusted individual is will vary from community to community. 

RI: Last time when we talked, you ended the interview with a positive note: finding the solution to ending this crisis by letting the experiments show that they are real, viable solutions. What is the best-case scenario as we are talking about vaccines and health literacy regarding the new Covid vaccine?

EFB: If our leaders are transparent and explain what is going on, both the ups and the downs, we can build public trust. If we have diverse leaders from the communities that we need to reach, and they are on-board with consistent messaging, I think we can be successful. We have to put aside the tribalism of politics and understand that this is for the good of our country, our families and our communities. We have done this before in other crises, so we are clearly capable of setting aside our divisions. I think that’s the message we need to put forward—we are all in this together. There are times that Americans have to get together for the good of ALL of us, and this is one of those times. 

Check out our findings below: