At my old institution there was discussion at the Nursing Research
council about a confusing "consent" form to be used in a study.  The
Nursing Research council wanted it changed because it was written at too
high a level.  The IRB board said no.  They use one consent and that was
the legalize that was required.  The nurses were all in an uproar and I
gave them information on how informed consent must be understood or it
doesn't matter.  Since it was nursing that wanted to do the research the
implication was "use what we say you can use or don't do research."  It
was a bad shot for Magnet but there wasn't anything anyone could do.
IRB especially at a small not academically associated hospital doesn't
have the time to review a hundred different consent forms.    It was
very sad.

 

On the note of filling out the forms at 5 different places or even the
same place multiple times.  The head of registration at my old hospital
was a friend of mine.  We were working on Six Sigma (quality improvement
program see www.isixsigma.com <http://www.isixsigma.com/>  for info) and
wanted to reduce wait times in registration.  I talked about my father
having to reregister each time he came to the hospital for an Epogen
shot.  Said can't we just give him a card so that all he has to do is go
to the place he is to get the shot and swipe it.  Found out that
Medicare/Medicaid rules require registration (signatures) each time
services are rendered.  Can't get around it.  It can be shortened
somewhat but most of the time it isn't.  Often the forms fill out have
nothing to do with our health but how the hospitals/physicians will get
paid.  

 

Julie

 

Julie Esparza
Clinical Medical Librarian
Department of Medical Library Science
LSU Health Sciences Center
P.O. Box 33932

1501 Kings Highway
Shreveport, Louisiana 71130
318-675-4179
318-675-5442 Fax

jespar at lsuhsc.edu


 

________________________________

From: healthliteracy-bounces at nifl.gov
[mailto:healthliteracy-bounces at nifl.gov] On Behalf Of Lisa Bernstein
Sent: Wednesday, March 26, 2008 11:53 AM
To: The Health and Literacy Discussion List
Subject: [HealthLiteracy 1868] Re: help

 

And thus, Janet, your story effectively illustrates that WE ALL have low
health literacy -- and NO ONE teaches healthcare professionals how to
effectively communicate with patients - no matter their education or
socio-economic standing.  So while those in the literacy field need to
help adult learners access health information their will not be real
change until we can work with in the healthcare system and medical
schools -- which I'm happy to tell you there are plenty of doctors,
nurses and writers (Including many on this listserve) working on right
now.

On Wed, Mar 26, 2008 at 11:42 AM, Janet Sorensen <Jsorensen at afmc.org>
wrote:

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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-- 
Lisa Bernstein
Executive Director
The What To Expect Foundation
144 W. 80th Street
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212-712-9764
www.whattoexpect.org

Providing prenatal health and literacy support so that women in need
know what to expect when expecting. 

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