Dear Janet,

 

Would you allow us to use your story/example when talking about health
literacy? 

We can either do so anonymously or with full disclosure. It illustrates a
good point.

 

We are interested in personal stories that help define some of the issues
relating to health literacy.

 

Thanks for your consideration

 

Susan

 

 

Susan Centner, Project Director

MAHEC Digital Library

1101 Duane Avenue

Rolla, Missouri 65401

(573) 368-6350 - cell

(573) 458-7282 - office

(573) 364-8972 - fax

www.maheclibrary.org

 

 

 

 

From: healthliteracy-bounces at nifl.gov
[mailto:healthliteracy-bounces at nifl.gov] On Behalf Of Janet Sorensen
Sent: Wednesday, March 26, 2008 10:43 AM
To: healthliteracy at nifl.gov
Subject: [HealthLiteracy 1867] help

 

Since I'm not quite as formally educated or experienced on this subject as
the rest of you, I have a question from a personal as well as professional
perspective.

 

As I'm sure many of you have experienced, I'm often handed printed materials
in the course of my own health care (or a loved one's), or asked to fill out
forms that I am tempted to rewrite, redesign and hand back to the health
care provider or staff member. As a writer, I've seriously considered doing
this (but waiting until my or my relative's health care crisis or issue has
been resolved). Is there a graceful, persuasive and nonoffensive way to make
suggestions to health care providers regarding, say, written materials,
preop and postop materials and processes, and so forth? Anything that has
worked or specifically NOT worked for you in winning support from health
care providers or others who are in a position to make seemingly simple
changes? I don't want to come across as a know-it-all because, for one
thing, I don't know it all, and also because such an approach or attitude
would not serve our purpose.

 

An example -- during my pregnancy, I was referred for a diagnostic
ultrasound because of my "advanced maternal age" and because I had decided
against amniocentesis. After the ultrasound, the high-risk OB again tried to
talk me into amnio and again I politely refused. He said the ultrasound
looked ok but would be read in more detail later. A few days later, I got a
form letter. The first four paragraphs talked about Down syndrome, what it
is, risk factors, "markers," and so forth, and how women with "advanced
maternal age" are at greater risk. In the fifth paragraph, it explained that
my ultrasound was (fill in the blank) negative for all of the Down syndrome
markers. But by then I had already assumed my unborn child had Down syndrome
and was freaking completely out. I ran the Gunning-Fog on it out of
curiosity, and it was higher than 12th grade, besides just being badly
written and badly organized.

 

When I mentioned this experience to my own personal OB (not the high-risk
guy) and said that I thought the letter could have been written more
effectively for the audience, he said it's too bad these uneducated people
can't read nowadays. I agreed and said it's also too bad some educated
people can't write nowadays. It occurs to me now, that probably wasn't the
best response for building collaboration and support...I'm blaming hormones.

 

I'm asking now because I just went through a grueling pre-op process at an
academic medical center with my 76-year-old mom, and we had to fill out the
exact same detailed form at five different clinics, although they have
electronic records there. I had to help an old man in one of the various
waiting rooms, who could not bend his arm and had no one to help him write.
And that's just the beginning. But I will stop now.

 

Any words of advice on how I could effectively offer my own, for the sake of
my blood pressure if nothing else? I realize health literacy and health
communication are huge and evolving fields of study, and we need scholarly
papers and more research, but we also need front-line fighters. Or maybe
guerilla is a better term. Polite and respectful, of course. Any response
will be appreciated. thx jps

 

Janet Sorensen

Web Writer

Arkansas Foundation for Medical Care

501-212-8644

 

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