Julie and everyone:

Thank you all so much for responding, on and off list! It's encouraging
to know so many people really do care about this issue with passion and
compassion. Thanks to your responses, I not only have a few ideas about
how to handle this sort of thing more gracefully and effectively -- I
also feel like things really are on the road to improvement. We all know
that better, more patient-friendly information and processes could
improve health, health care delivery and outcomes. Who knows to what
degree? Maybe we'll have a chance to find out within my lifetime.

Please keep working together, researching and making a case for better
health care information and communication. And I will try not to make
the job harder by offending health care providers! Please keep the ideas
on that coming if something occurs to you. My mom's surgery is tomorrow.

Thanks again.

Janet Sorensen
Arkansas Foundation for Medical Care
Little Rock, Ark.

-----Original Message-----
From: healthliteracy-bounces at nifl.gov
[mailto:healthliteracy-bounces at nifl.gov] On Behalf Of Julie McKinney
Sent: Thursday, March 27, 2008 8:58 AM
To: healthliteracy at nifl.gov
Subject: [HealthLiteracy 1880] Re: help

Janet,

Thanks so much for sharing your story with us and, as a mother of
"advanced age" myself, I can totally relate to that stressed moment! One
of the things that I think your story confirms for us is the power of
storytelling. You can see how many time-crunched, insanely busy people
on this list found the time to write in to respond to you. (I was at a
health literacy summit yesterday and people there read your message on
their palm pilots and phones and were touched by it!)

One would hope that this would have a similar effect on the hospital
staff who are alerted to this unintended effect of their letter. They
say that a less threatening way to respond to things that offend you is
to start with "this makes me feel..." rather than "you did this
wrong...", and in this case I think that approach would be effective.
They should definitely be told how their letter is going to make most
people who read it feel! You could also remind them that when people see
or hear a scary word (like "cancer" or "downs syndrome") they rarely
hear or see anything that follows. Those who write and approve these
letters MUST get this feedback.

I doubt if there are any lawers on this list, but maybe we should
recruit some into the health literacy conversation. I have heard
frustration from those in hospitals/health centers who work with
patients and see this kind of thing every day. They say that many
hospital documents go through the legal department, which requires
certain language to be used.

So... anyone on this list who has a legal department overseeing their
documents, please invite your legal department to join this list, invite
them to your health literacy awareness events, or at least forward this
letter to them. 

Julie

Julie McKinney
Discussion List Moderator
World Education/NCSALL
jmckinney at worlded.org


>>> "Janet Sorensen" <Jsorensen at afmc.org> 03/26/08 11:42 AM >>>

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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