I can only offer my own personal experience. I was filling out a form at
my son's orthodontist and I found one of the questions ambiguous. While
I could figure out what I thought she wanted to know, I left the space
blank on the form. When I met with her I said I had left that part blank
because I wasn't sure what she wanted to know and explained the two
possible interpretations. It had never occurred to her that the question
could be misinterpreted, and she seemed to appreciate it being pointed
out to her. Whether she actually got around to changing the form, I
don't know.
 
I also got into a bit of a fight with my allergist because he wanted me
to fill out a form that I had filled out last year. I asked whether I
could just initial and date the old form because nothing had changed,
but he insisted that I fill out another one. When I talked to him about
literacy challenges some patients face, he said they would help someone
who had difficulty filling out the form, but he didn't think that was
the problem in my case. I tried to explain about stigma and you can't
tell by looking, but because we had started with a confrontation he
wasn't taking it in. 
 
The moral of the story is that sometimes some duplicity about your
agenda can be useful. For example, if you had called up the sonographer
and pretended you thought the letter said that your baby had Downs
Syndrome, you might have gotten a better reaction than if you told them
they needed to change their forms so they didn't scare people.
 
Cindy Brach 
Center for Delivery, Organization, and Markets 
Agency for Healthcare Research and Quality 
540 Gaither Road 
Rockville, MD  20850 
phone: 301-427-1444 
fax: (301) 427-1430 
Cindy.Brach at ahrq.hhs.gov 

________________________________

From: healthliteracy-bounces at nifl.gov
[mailto:healthliteracy-bounces at nifl.gov] On Behalf Of Janet Sorensen
Sent: Wednesday, March 26, 2008 11:43 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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