In honor of the Darkest Day of the Year, I’m writing about a dark moment in health literacy — one that shows how pervasive low health literacy is even amongst the best educated, and most powerful, of us. The moment occurred during President Barack Obama’s recent rationalization for keeping the birth control product Plan B available only by prescription to people age 16 and younger.

At a news conference two weeks ago, the president supported the decision by U.S. Health and Human Services Secretary Kathleen Sebelius by saying: “The reason Kathleen made this decision is that she could not be confident that a 10-year-old or an 11-year-old going to a drugstore should be able — alongside bubble gum or batteries — be able to buy a medication that potentially, if not used properly, could have an adverse effect.”

Whatever your stance on Plan B, if you are pro-health literacy you cannot support this statement. All medications, whether they be over-the-counter, prescription, herbs, vitamins, or supplements, can have harmful effects even if they are used properly.  In fact, that is why local poison control centers are staffed with pharmacists. Second, children age 10 or 11 already can get their hands on copious amounts of medications  that potentially, if not used properly, could have an adverse effect.

Popular over -the-counter pain relievers widely available to 10 and 11-year olds have been linked to Reyes Syndrome, asthma, liver and kidney damage, and excessive bleeding among other issues. By singling out Plan B, the President appears as though he is unaware of the other dangers lurking in the aisles of most pharmacies.

The misleading science in the President’s statement garners him a low health literacy grade. We hope he does better in his next outing, and takes a leadership role in this tremendously important area of health.  Health literacy, according to the Journal of the American Medical Association, is a stronger predictor health status than age, race, employment status, or education level.

Improving health literacy should be one thing both sides of the aisle can agree on: It reduces costs and improves health. Mr. President, we respectfully request you lead by example!

Here’s something to chew on:  Around 62 million Americans – about one in five of us – live in rural and frontier parts of the country.   There are fewer health care professionals in these areas.  If you live in or near a city, say New York City, L.A., Chicago, or Phoenix, etc. it’s easy to take our ability to get care for granted.  I am not talking about quality.  I mean being able to find a doctor, a dentist, a psychologist and so on, that you can get to and who can see you when you need it.  It’s also much harder to get to a high-level trauma center in under an hour in rural places, particularly if where you live is remote. Rural and frontier areas also tend to have higher poverty rates and older populations with many chronic conditions that require on-going care.

With all these challenges, it’s no wonder that the Health Resources and Services Division of the United States Department of Health and Human Services has designated certain places in our country as Health Professional Shortage Areas (HPSAs).  These are “Medically Underserved Areas/Populations… that have… too few primary care providers, high infant mortality, high poverty and/or high elderly population.” [http://hpsafind.hrsa.gov/]

It can be hard, to say the least, to be a patient or caregiver, when you live in a place that might require you to travel quite a distance for care.  Aside from the geographic challenges, you might not have health insurance or enough of it.  Many rural patients and caregivers pay out-of-pocket for care, sometimes more so than their urban counterparts.  And, if you are treated you may end up managing quite a lot on your own at home.

But there are good things too.

Rural and frontier health care professionals often treat whole families from the youngest to the oldest.  They tend to be the medical equivalent of one man bands:  They birth babies, diagnose and treat cancers, set bones, stitch wounds, make earaches go away, and help a great grandfather be more comfortable in his last days.  And yes, rural and frontier doctors sometimes make house (or ranch or farm or reservation) calls.  By necessity, they often spend a lot of time going over care plans and next steps and how-to’s with their patients and caregivers.  In other words, the care tends to be comprehensive, holistic and patient-centric.  And patients and caregivers can benefit greatly from that.

So let’s give a shout out — or a yodel — across the hills, valleys, lakes and prairies to all the rural and frontier doctors and nurses and medical staff out there  — and those who are helped by them.  In many ways, these are the people — professionals and non-professionals alike –  who are on the frontier of health literacy and patient empowerment.  Why? Because they have to be.

Happy National Rural Health Day.  You can learn more at http://celebratepowerofrural.org/.

By Anna J. Allen

Back in 2004, when Say Ah! was just a conversation at the kitchen table, co-founder Helene Eisman Fisher and myself would call our friends and colleagues to tell them about our plan to start a health literacy non-profit. We expected our announcement would receive a reservoir of  support, followed by much commiserating over how totally confusing health care has become.

Instead, we were often met with silence, and then the question we have come to dread: “What is health literacy, exactly?

After defining “health literacy” to everyone from oncologists to adolescents to policy makers, we’ve come to see it as not just a term but a test. Those who know what “health literacy” is seem to have it, at least to some degree, and those who don’t, well, don’t. For those most in need of health literacy, the term is often yet another jargon-y phrase that is at best difficult to grasp and at worst intimidating, exclusionary, and misleading.

In an effort to find a term that people of all abilities can understand, Say Ah! is honoring “Health Literacy Month” by holding a contest to re-name “Health Literacy.” Send us your new phrase, term, even your long-winded but clear explanation. We don’t care — give us something we can use! We’ll print them here, tweet them, and post them to Facebook. The best new name wins bragging rights, and our deep and everlasting admiration! Start sending us examples to info@justsayah.org. May the best definer win!

Even the word “literacy” is a struggle.

Often misunderstood as the ability to decode text, literacy covers a demanding set of skills that requires people to read with purpose and understanding, to find and use written information, and to do basic quantitative reasoning. Tack on the word “health,” and the term becomes inaccessible to all but those with high (often the highest) levels of literacy.

At Say Ah!, we wrestle daily with trying to explain this concept to the very people who are best served by knowing it — those who suffer from low health literacy. After years of grappling with this, I was somewhat relieved — and almost delighted — to see that today is the difficult to read:  ”International Literacy Day.”

High literacy, it turns out, loves company.

Although the title seem fairly generic, the five and four syllable words “International Literacy” are not just unreadable to the illiterate, but are also to those with limited — and even ‘ordinary’ — literacy skills.

That a global movement created to help people learn to read and write would choose challenging words to name its day, underscores how difficult it is to bridge the gap between those that have proficient (and often exceptional) literacy skills – and those that don’t. And yet thinking about alternative names for the day – ones that are more accessible to a broader range of abilities – is a reminder that the line between literacy and illiteracy is movable, and can be moved to the benefit of a great many people. In the United States alone, more than 30 million people have difficulty reading, and nearly 60 million more can perform only basic literacy tasks.

We know the line can be moved to help people, because in health literacy we see how it has been moved to hinder them.  Basic literacy is in the grasp of most Americans — nine out of 10 adults can complete the tasks needed to function in our society such as balancing a checkbook, filling out a form, finding information on a page, and reading and understanding a short newspaper article. But when the bar is raised, as it is in our health care system, the numbers not only go down – they are practically inverted: Nearly 9 out of 10 people lack the skills needed to manage their health.

This swift reversal of fortune is a simple word problem: The average American reads at a 6th-7th grade reading level yet most health and medical information is written at a 10th grade level or above. When faced with this disparity, the average adult becomes functionally illiterate, as one out of two people are in dealing with the health care system.

The links between both low literacy and low health literacy and poor health outcomes gained momentum in the academic world in the 1990s, and is now firmly rooted in science. Literacy skills — more than education, age, race, income level, and employment — will better predict a person’s health status. Yet despite 25 plus years of research and millions of confused patients interacting with the system every day, health and medical information is still written way above what most people can read and understand.

So we ask you, in celebration of International Literacy Day, to raise awareness of literacy by working to lower the bar, and enfranchise more readers. This is not a dumbing down, quite the opposite — it is making written information clear and accessible. So go out and revel in the day by asking your doctor to give you pamphlets you can understand, telling the pharmaceutical and medical device companies to use large print type and have clear instructions on their labels and in their leaflets, and demanding academics write up their very interesting and relevant research papers in language you can comprehend.

And to help people understand what it is like for someone who struggles with literacy, show them the following example of how a person with low literacy would “read” the above paragraph.

So we ask you, in celebration of International Literacy Day, to raise awareness of literacy by working to lower the bar. Ask your doctor to give you pamphlets you can understand, tell the pharmaceutical companies to use large print type and have clear instructions on their labels, demand academics write papers about literacy and health literacy in language you can comprehend.

Here on the East Coast we’re getting ready for Irene.  We have our checklist:  Dry foods.  Water.  Batteries.  Flashlights.  Fill the tub.  Charge your cell phone.  Etc. Here are a few more health-related things to add to that list to help you ride out the storm:

• Make sure you have all your medications on hand, as well as any medical devices you use such as an inhaler.  If you are low on or out of anything, call your doctor today and ask to have her call in a prescription to your pharmacy.

• Pack up your medications (and any other health- and medical-related devices or supplies) in a waterproof bag(s), and put everything in a place that is easy to get to.

• Remember to pack everything you need but also whatever your children, spouse or partner, or elderly parents will need as well.

• Make a list of the medications you take (including prescription, over-the-counter, herbs and supplements) and your health history, which should include important health and medical information such chronic illnesses, allergies, etc. Also include your doctors’ names and numbers.  Say Ah! suggests keeping this information with you at all times, rain or shine.

Click here for more Say Ah! Tips and to download and print out our Medication List, now available in English, Spanish, Haitian Creole and Russian: http://www.justsayah.org/tips-for-you/tips-for-talking-with-your-doctor.)

Also, you can find FEMA’s list of supplies here:  http://www.fema.gov/areyouready/appendix_b.shtm.

Be prepared. Be safe. Stay dry. Stay healthy.

Use these tips to help make your children’s check-ups better, simpler, and safer!

1. Get your forms in order! Have all the school, daycare, and athletic health forms you need for each child so you know which doctors to see and what paperwork you will need to have signed.

2. Call ahead to schedule the appointments. If weekdays are a problem for you, find out if the doctor is available on weekends.

3. Give your child a head’s up. You may want to prepare him or her for what will happen (or not) at the doctor’s office.

4. Make a list of important information and bring it with you. This includes:

•    What medicines your child is taking. Include prescription and over-the-counter medications, vitamins, herbs, and supplements (such as protein drinks).

•    Important facts about your child’s health. Include allergies, chronic illnesses, and any past surgeries, broken bones, etc.

•    Questions or concerns that you – or your child – may have about his or her health.

Hint: Make three copies of this list: One for you, one for your doctor, and one to give the front desk for your child’s file updates.

5. Check that your child’s records are correct and up to date. The lists you just made should square with what is in your child’s file.  This is especially important if your child sees more than one doctor or has been to a hospital or an emergency department.

6. Communicate with your child’s doctor!  Speak up when you have something to say — you are your child’s advocate!  Ask questions whenever you don’t understand something, whether it is a medical term or medication directions.

7. Take notes so you don’t forget what your doctor tells you.

8. Make sure you (and your child if s/he is old enough) understand important information such as medication directions, how to use an inhaler or other medical devices, or what to do if your child is referred to another doctor.

•    Ask your doctor to repeat instructions if you don’t get them the first time.

•    Check your understanding by saying, “Okay.  Let me make sure I’ve got this right,” and repeat back to your doctor what s/he just said in your own words.

•    If you go home and realize you have a question, contact your doctor immediately and ask for clarification.

9. Get your child’s weight and height. This is great information to have as many medications are often given by weight.  NOTE: these numbers can change throughout the year, so use them only as guidelines.

10. Finally – don’t forget to get those school, daycare, and athletic forms signed!

Bonus Tip: Do you know your child’s blood type? If not, this is a great time to find it out!

A year ago yesterday my husband was diagnosed with congestive heart failure.  Thanks to having health insurance, a team of terrific doctors and nurses, a low salt diet, exercise, helpful medicine, lower stress, Dan is doing fantastically.  Dan is healthier now than he has been in years.  Two weeks ago, he gave a three hour rock concert for 400 wild and wonderful West Virginians.  What a difference a year can make.

Anniversaries are good times for reflection.  I have been thinking about what Dan’s illness has taught me.  In some ways, not a lot.  I don’t mean to be flippant but as the co-founder of a health literacy organization my eyes are wide open when it comes to just how nutty and hard being a patient, a caregiver and a health care provider can be.  But I will say this, every component of this journey – from the moment Dan called to say he wasn’t feeling well, to his diagnosis, to when his cardiologist rolled out the treatment plan – everything – has been informed by a monumental salad of hard, easy, weird, subtle, vivid, you name it, kinds of communication.  Giving information.  Getting information.  Using information.  Incorporating information.  On and on.

Dan’s story is one of success.  But it is also a story about a year of asking questions, following directions, finding liveable ways to follow medication and diet regimens; it is a story about providing details (his doctor asks, “How do you feel?” and genuinely wants to hear the truth); tracking information (weight gain and loss, appointments, lab results); keeping files (medical records, health insurance, etc.).  On and on and on.

Communication is a fragile and complex thing.  And it is at the heart of our health and health literacy.  So if I sound like a broken record – Speak Up, Take Notes, Ask Questions, Take Action, Teach Back – to the patients, caregivers, health professionals and community service providers that I communicate with – so be it.  Whatever it takes… it’s all about better outcomes.

Welcome to Say Ah!’s first newsletter — arriving just in time for your summer reading! Discover many of the great things going on here, such as Say Ah!’s free workshops for health care professionals, our new Board and Advisory members, and highlights from our health literacy programming helping vulnerable populations access and use the health care system safely and effectively. So grab a beach chair, relax, and enjoy reading about Say Ah!’s work!

Say Ah! is thrilled to welcome Maureen Harrison, Jeanne Johngren, Michael Johngren, and Jill Povol to our Board of Directors, and Paule Joseph to our Medical Advisory. These marvelous individuals are dedicated to Say Ah!’s mission, and to supporting the growth and expansion of our much-needed programming.

Say Ah!’s Patient Workshop Extravaganza

Say Ah! has already led nearly two dozen “Patient 101″ workshops so far this year for the people of New York City and the Hudson River Valley, thanks to generous support from New York City Council Speaker Christine Quinn, Allstate Foundation, and private donors.

These engaging and interactive seminars help people gain the basic skills needed to manage their health in today’s complex health care system. For many patients and caregivers, knowing how to ask questions, give important health information, take notes, and follow-up can make all the difference.  Contact us to schedule one for your clients, community members — or co-workers!

FREE Health Professional Development Seminars: Limited Time Only!

Say Ah!’s Tips: Now in Four Languages!

Say Ah!’s Tips for Talking with Your Doctor and Medication List are free and available in English, Spanish, Haitian Creole, and Russian. Click here to download and disseminate them!

These easy-to-use and easy-to-read materials can help empower a wide range of patients and caregivers, including those with low literacy levels, reading and learning differences, and vision impairments, to get more from their doctor’s visit. Order Say Ah!’s printed cards (pictured) here!

I heard an expert of some kind on the radio today say that people should find out what the heat wave guidelines are and then follow them.  Fair enough.  But I wondered why he didn’t just give us the guidelines.  Maybe he didn’t have enough time or something.  It’s a shame because presumably there were hundreds if not thousands of people listening to the program who could have benefited from getting the facts.  And why not give the facts rather than send us off to do the research?  Especially someone like me who was listening to the radio while driving.

Vague health and medical information is often avoidable.  Here are some basic Say Ah! tips that health care professionals and direct service providers can use to help their patients understand them better:

• Use everyday, plain language
• If you have to use a medical term, define it
• Be concrete, i.e. “Take your pill with breakfast, lunch and dinner,” rather than, “Take your pill three times a day.”
• Put numbers in context, i.e. “one out of 10 people” instead of “10% of the population” or “your bad cholesterol is 160, that is a higher than we want. Let’s try to get it down to below 100.”
• Use metaphors to make the information more familiar, i.e. “blood going through a vein is like water moving through a hose.”
• Ask open-ended questions, using “what” or “how,” i.e. “What are your symptoms?” not “Do you have symptoms?”
• Use visual aids – draw a picture, grab a pamphlet or use a model

There are more tips for professionals on the Say Ah! web site: http://www.justsayah.org/tips-for-providers/health-literacys-impact.

And for patients, if you don’t understand something, say so.  Ask questions when you need to.   There are more tips for patients and caregivers here: http://www.justsayah.org/tips-for-you/get-better-health.

By the way, here are some heat wave guidelines from the Red Cross:

http://www.redcross.org/portal/site/en/menuitem.53fabf6cc033f17a2b1ecfbf43181aa0/?vgnextoid=1750779a32ecb110VgnVCM10000089f0870aRCRD&currPage=b9000726d6312210VgnVCM10000089f0870aRCR

Stay Cool.  Be well.

Ah Summer.  LOVE it.  I grew up at the ocean and the only “July effect” I ever knew was a bikini line. But in the health biz, the July Effect is that time of year when experienced residents in teaching hospitals move on from their assignments and are replaced by newbie interns. Thus, patients may not get the care they need or want during this period.  Our  top recommendation:  Bring someone with you to the hospital – that way you will have someone there to be your advocate.

Actually, we at Say Ah! believe that you should always bring someone with you even to a routine doctor’s visit. Bring a trusted friend or family member — someone who can help you make the most out of your doctor’s visit, especially if you are nervous, too sick to focus, or distracted. The person who goes with you can take notes, or ask questions and provide information that you might be forgetting to ask or tell.

Our second tip to combat the “July Effect” is:  Bring important health information with you. If it is not an emergency situation and there’s time, write down your medical history, make a list of your medications (or put them in a bag and bring them all with you! ) This includes all prescription and the over-the-counter medications, vitamins, herbs, and supplements.  Also, bring a list of your symptoms, questions and concerns. Make copies of what you wrote – or give it all to the person accompanying you – so that they can use these materials as a reference tool.

Our third recommendation is: Speak up! If you don’t like the care you are getting or if you see something that makes you uncomfortable, say something.  If you are in a hospital, ask to speak with the doctor in charge or a nurse  Or, if you do have someone with you, have them speak up on your behalf.

Life’s a beach.  And sometimes the world seems divided between lifeguards and swimmers.  But in certain health-related situations, you need to be a little bit of both.  So if you see danger in the water, get out your life preserver, throw a line, put on your whistle and BLOW.

You can read more about July Effects at http://consumer.healthday.com/Article.asp?AID=654776.

Be safe.  Be healthy.  Be health literate.