How To Health Literacy (H2HL), is taking a revolutionary approach to health education and communication. To change X health behavior, most people need to know Y. We work on communicating the "WHY" in an engaging way. Our goal is to begin to address the many unmet needs of patients with chronic diseases, key concepts in prevention, and critical preparedness issues.
I’d like you to spend 4 minutes taking a look atHow To Think Like a Scientist: H1N1.It’s the first short animated video produced through our new endeavor, How to Health Literacy (H2HL), and we’re excited to hear your reaction.
As you know, improving the quality of health communications and making information more accessible to a broad audience is critically important. Having been discouraged by the quality of existing materials, my colleague, Joslyn Levy, a well respected public health expert, and I have finally decided to take the plunge and start producing our own tools and materials.
H2HL, is taking a revolutionary approach to health education and communication. To change X health behavior, most people need to know Y. We work on communicating the "WHY" in an engaging way. Our goal is to begin to address the many unmet needs of patients with chronic diseases, key concepts in prevention, and vital preparedness issues.
How To Think Like a Scientist: H1N1, takes the mystery out of swine flu recommendations, thereby improving people's understanding, trust and willingness to take health actions to protect themselves and others. The video introduces vital concepts - What is a virus? How does it spread? What's the role of public health surveillance in protecting me and my family?
Our target for this video is employers, public health agencies, health care providers, and any organization that is encouraging its constituents to take important actions to prevent the spread of the H1N1 virus. As a respected colleague, I am interested in your feedback on this video and your recommendations for organizations that might be interested in licensing this video or learning aboutH2HL.
These are directives or precaution sound bites. And like all such directives - “Don’t eat the fish from this river.” …”Take all of this medication,” they reflect 3 important assumptions we make about people:
The receiver trusts the messenger and is predisposed to follow instructions
The receiver understands enough of the underlying health/science concept to judge the messages import
The receiver has the means to do what the message is directing
As the primary health information the public gets these sound bites are woefully, inadequate. They leave the public unarmed in the face of fast breaking, and concerning information about the serious of the H1N1.
Yesterday the Washington Post (10/17/09) reported on the now clearer links to deadly pneumonia. (my use of color in text)
“Seasonal flu viruses tend to infect primarily the upper respiratory system. But recent animal studies and autopsies on about 100 swine flu victims show that H1N1 infects both the upper respiratory tract, which makes it relatively easy to transmit, and also the lungs, which is more similar to the avian flu virus that has been circulating in Asia.
"It's like the avian flu on steroids," said Sherif Zaki, chief of Infectious Disease Pathology at the CDC. He noted that unusually large concentrations of the swine flu virus have been found in the lungs of victims: "It really is a new beast, so to speak."
There is nothing in the 3 precautionary sound bites that prepares the public to understand, in lay person’s terms, the import of scientists’ universal concern about H1N1.
So - A Proposal for Post-Modern Approach to Public Health Literacy
1. Let’s just suppose, for argument’s sake, that we put aside a core belief in the field of health literacy and public health communication that has spread, virus like over the last 20 years. The questionable assumption is that simplifying information is the primary solution to an uninformed and low health literacy.
2. Let’s entertain the idea that universal simplifying of all health messages is not the solution it’s cracked up to be. That “simplifying” has over-promised.
Much that passes for “clear and simple” health information is badly conceived and poorly composed. It deletes out most evidence salient to consumers, leaving staccato, look like sentences that create yawning inferential gaps most people simply can’t fill.
3. Let’s also assume that this basic tenet - simplify, simplify, simplify - has yielded public health communication by subtraction. Over the last few months public health communicators have backgrounded vital health literacy concepts - how viruses are ingenious in mission to stay alive, the import of their changing, why scientists care about changes in a virus, how global health surveillance works, what scientists are watching for…
We background all of these core “scientific” facts and then wonder why almost 40% of parents don’t intend to vaccinate their young children; and millions of adults joined them in this ambivalence.
Where would that leave us?
For starters, we would find ourselves talking less about “low or inadequate health literacy” of patients and the public, and forced to talk more about the specific health literacy skills and abilities people do have and are using to make their decisions every day.
Actually talk about how parents are understanding H1N1 and the vaccine.
How they talk to their friends and family.
Then use this discourse, these ways of knowing to find common ground to talk to them about what we know.
The more I track the messages about H1N1 the public is getting, the more I am convinced that the consequences are we may very well be perpetuating limited access to the complex and nuanced information necessary for patients and publics to make informed decisions about health and risk. And, as importantly, un-tempered and unquestioned surface level simplification is perpetuating a disequity in access to the larger information commons. Neither is a very good result.
"A narrow, quick-fix approach will not be enough to deal with the chronic diseases and community transformation that have worsened over the last few decades. We need to adopt systems thinking and changes to undo the damage our built environment has already done. But the underlying idea is, in fact, a simple one, one that we all learned in kindergarten—we humans work and live better when we have the opportunity to play, run around, have fun, and be outdoors with people we like. This simple lesson should underscore the way we plan and inhabit our environments."
It’s hard to imagine a clearer, more inviting and trustworthy manner of communicating than that of Dr. Anne Schuchat (CDC) speaking in a podcast interview on 8/20 about H1N1.http://www2a.cdc.gov/podcasts/player.asp?f=13958 (Last accessed 9/5/09).
From the self-effacing style of her explanation of her uniform, to her colloquial way of explaining issues related to H1N1, she is the ideal spokesperson for the general public.
However, even within this clear communication, there are barriers that can trip up the average - to - low health literate listener. An important topic is that viruses change.
In the podcast the interviewer asks Dr. Schucat:
[Pam Bryant] Okay, and so when you say "seasonal flu," that's regular flu that some people get every year.
[Dr. Anne Schuchat] That's right. And those seasonal flu viruses change a little bit year to year, but not so much, and this new H1N1 virus is so different that we don't think the general population is protected against it. And we're taking extra steps to offer protection. We do a lot for seasonal flu. We offer flu vaccine each year. This year, we're making a special vaccine up, the H1N1 vaccine, that will be offered in addition to the seasonal flu. There’ll probably be different recommendations, but I can tell you a little about them, if you want.
One of the science health literacy concepts that is not understood by so many is that a virus is always changing. And. these changes can make the virus more efficient or less efficient, and then more or less a risk to human health.
This is not just splitting hairs. If you don’t understand something about viruses changing, you run the real risk of questioning: why is this virus such a risk? Why can’t the seasonal flu vaccine protect me? What role does public health surveillance play in tracking the evolution of the H1N1 virus?
Addressing this issue in the clear, straightforward manner of the interview would be an excellent way to begin to introduce this vital science literacy concept.
The payoff if we explain the constantly changing nature of viruses would:
Help consumers understand why there are new flu vaccines each year
Help consumers understand why the seasonal swine flu vaccine will not protect against the H1N1 flu
Contribute to the consumers understanding and trust of changing recommendations about H1N1 as the pandemic flu evolves
“So why do you think they’re telling people that we should sneeze into our sleeves, like this?” I ask a young woman leaving the Duane Reade pharmacy cum superstore on Madison and 102nd Street.
“That’s to save for the environment” she pops back. “To use less paper. You see?”
“Excuse me, Sir. Is there anything you plan to do to prepare for the swine flu this season?”
“Well, gotta see what it winds up being. Right now I’m just using the hand cleaner stuff instead of soap and water. So we’ll see if that does the trick.”
And to a woman in midtown, rushing back to the office balancing a half-eaten slice of pizza and coke - “How concerned are you about the swine flu this season?”
“Oh! Are they still worried about that one. I thought they said it’s no big deal anymore.”
Since last spring there’s been no lack of information. Has all this information - guidelines and recommendations resulted in some magical thinking? I can only use my own experience as evidence that this is happening.
When you chase down a Wikipedia defintion, you see that “Swine influenza is endemic in pigs.”
Pigs - But all these years I thought cooking pork to a glistening whiteness was enough.
Medline Plus clarifies.
“Earlier forms of the H1N1 virus were found in pigs. Over time, the virus changed (mutated) and can now infect humans.”
Mutant viruses - that sounds disgusting! I try not to think back to our parents’ house circa 1958. All those mutant monsters and Japanese speaking scientists.
Far East - isn’t that where a lot of these viruses get their debut? Xenophobia - shame on me!
My logic tilts appreciably. So this mutant virus is from pigs. But pigs are safe to eat and not sick. So does that mean, we humans are just the next victims in the virus food chain?
Prodded on by the straight up New York Post headline -
Swine flu could kill 90,000 Americans.
I google the Mayo Clinic. Those steady, sure Midwesterners. But the site adds to my distress by implicating a host of new creatures.
“The outbreak of what is popularly called swine flu involves a new H1N1 type A influenza strain that's a genetic combination of swine, avian and human influenza viruses. It can spread from human to human.
So is the 2007 bird flu passé?
My neighbor says she’s still worried about the pigeons in the park - hasn’t brought stale Thomas’ English muffins out there for months.
“But we don’t, bed down with them - the birds, I mean. “I read bird flu is a problem in Asia where people live in close quarters with their flocks - of suspect birds.” I suggest having lost my competent intellectual veneer somewhat.
My neighbor shakes her head. “Who you gonna believe?”
Did scientists simply lose their compass? Spend too much time in the lab?
Perhaps, if we just hold out long enough until these viruses peter out?
I go to work. Merciful, unambiguous work.
“If you See Something Say Something” irreconcilably juxtaposed with the tacit agreement that you should never, at all cost, notice or linger too long on someone in your field of vision.
No one is sneezing into their arm. Not a one.
Maybe they’ll start giving out “sneezing citations”. Imagine that. “8000 commuters were fined this morning in separate episodes of failure to sneeze hygienically.” A new type of civil society… I daydream.
So one night, I go there. What if I get the swine flu - H1N1. Or my kids get it?
What if the sneezing into the sleeve, the hand washing, the air kissing all fail? I fail?
Was it for lack of wearing the facemask at the dinner table?
Wasn’t I instructed clearly on the CDC website:
“Wear a facemask – if available and tolerable – when sharing common spaces with other household members to help prevent spreading the virus to others. This is especially important if other household members are at high risk for complications from influenza.”
I let my mind run wild now. We’re sick. I’m sick.
Google Health is there to tell me how to prepare a “sick room”
“Keep the sick person in a room separate from the common areas of the house. (For example, a spare bedroom with its own bathroom, if that’s possible.) Keep the sickroom door closed.”
Just when my thoughts are racing …..I read in the NY Times:
“Defying the expectations of experts, clinical trials are showing that the new H1N1 swine flu protects with only one dose instead of two, so the vaccine supplies now being made will go twice as far as had been predicted.”
A vaccine against the H1N1 virus will be effective with just one dose and within 8 to 10 days of being taken. The US government confirms, on most TV news. Kathleen Sebelius, the Health and Human Services Secretary, said that the vaccine is working quicker. And in fact adults may just need one shot, not two.
But wait. So maybe they’ve got this one all wrong. An epidemiologist’s Kohoutek. ?
While walking the dogs in the park this morning a fellow dog person was saying -
“ My niece in Delaware is sick. They don’t know if it’s swine flu or, what’s that other thing?…..Lyme disease. Farm country down there. Thank God we’re in the city.”
I’ve just come into my building and the doorman hands me a small package - “From 8H he says.” When I get upstairs I see it’s a bottle of garlic oil from my organic friend with a note: “Heard you were going a bit oinky!”
I sit down with the papers and my laptop, momentarily disenthralled with the notion that more is better.
As I’ve been tracking and analyzing swine flu, H1N1 messages since last spring I see the current public understanding a logical and direct outgrowth of narrowly conceived communication strategy and even narrower appreciation of public health literacy.
Parents, people are as intent as ever on their families’ health and safety.
Yet a Consumer Reports study finds that only 35% polled intend to have their child vaccinated.
Huston - we have a problem.
But what could the problem be?
The psychologist, George Miller once said -
When you’re disagreeing with someone, STOP.
Then say to yourself - “What this other person is saying is true.”
And then ask yourself “What could this be true of?”
Instead of being dismayed and wringing our hands about the public that just doesn’t get the seriousness of H1N1, let’s try a little thought experiment
Outside of Duane Reade
I’ve been interviewing people about swine flu, H1N1 out on the street since last Spring. And not surprising, people are using whatever health literacy abilities they have to make decisions about the risk of swine flu, and now, the safety of the vaccination.
As I reported in a post (9/15), I asked a woman why they’re recommending “we sneeze into our sleeve?”
Confidently she say -
“For the environment,” .”You save the paper….”
And a man explains his strategy for hand washing -
“Well, gotta see what it [the flue[ winds up being. Right now I’m just using the hand cleaner stuff instead of soap and water. So we’ll see if that does the trick.”
I flipply called this “magical thinking”
But it’s not. It’s health literacy at work. (Remember Miller’s challenge - think about what the person is saying and then ask yourself, “What could this be true of?”
The more I talk to people, the more I’m constructing a better idea of the health literacy people have and are using about H1N1 ( and viruses more generally).
If you look at the key health messages that have been promoted from the federal HHS/CDC level down to local governments and experts it’s been 3 clear and simple messages:
Wash your hands often
Sneeze into your sleeve
Stay home if you’re sick
But the fundamentally important health information that has been virtually ignored involves communicating ( and repeating) core health literacy concepts in clear and understandable ways. These include:
What does it mean that this is a “new” virus?
Why is that important to me and my family?
What do vaccines do to protect us and why is it risky to let children “naturally” develop immunity during a pandemic?
As we wrote in our textbook on health literacy, “A silent killer maneuvers just below the surface of almost all the health and public safety issues in the 21st century. The silent killer is low health literacy – the reality that almost half of adults in the U.S., over 90 million people struggle to find, understand, and correctly use health information. (Zarcadoolas, Pleasant & Greer, 2006).
As I track and study the swine flu communication I am placing it, thus far, in the category of a missed opportunity.
Public health officials may have incorporated popular social media strategies into their toolbox, but the messages have been driven by the old dissemination model - just get the facts out there and people will take good health and safety actions.
Is it possible that the compact to create clear and simple health information has over-promised - not lived up to its billing? What if the complexity of health information in the first half of the 21st century requires more than simple representations of science, medicine and decision-making?
Wash your hands….sneeze into your sleeve?
What if we the intentions to simplify are good, but many of the executions are bad?
And so, this universal simplification has yielded a public health communication by subtraction, the consequences of which are that we are unwittingly perpetuating limited access to the complex and nuanced information necessary for patients and publics to make informed decisions about health.
And, we could take this argument one step further.
What if we entertain the idea that this un-interrogated over-simplification of health and safety information is also very likely to perpetuate an unequal access to society’s larger information commons. So what we communicate ( and don’t) contributes to the historical and tragic difference between the haves and the have nots. This time with potentially deadly condequences.
I’d really like to hear your thoughts about how swine flu is being communicated?
Anyone else talking to people about what they understand and plan to do?
"The pork industry is expected to lose billions by the end of the year. A steep drop in pork prices hit the industry in May, when the H1N1 virus was discovered. Though the virus still has not been found in U.S. swine herds, it initially was referred to as “swine flu,” and the name has stuck in popular culture. Some countries refused to import pork from North America and, despite efforts to spread the truth about the safety of pork, the reputation of swine was damaged for a time."
The FDA wants swine farmers to test for H1N1 - knowing that viruses are common in swine herds and once herds recover they are ready for market. But big business knows that if they test more and find more instances of virus this information, if it got out to the public ( and it would) would greatly effect how safe consumers would feel about buying and eating pork. If I weren't a striving vegetarian I could see myself working on communicating the science health literacy about this to the public - explaining the safety of pigs.
You could focus on explaining viruses, how they work, that they already exist in so many animals that we eat, and that surveillance on H1N1 virus in pigs is simply being done so scientists can learn about how the virus changes.
But as I'm writing this I'm thinking maybe, just maybe the public IS PUTTING ITS HEALTH LITERACY TO WORK JUST FINE.
H1N1 is a nasty virus
Pigs have H1N1
Therefore eating pigs might be something to avoid.
Isn't this the precautionary principle at work?
Commercial markets aside - isn't this what we would urge people to do until more data is in?