First of all Janet, please let me sympathise with your experience. Unfortunately, you are not alone.
 
Regarding your question about strategies to get clinical people to rewrite letters and forms, I have the following concepts and experiences of my own to offer.
 
Firstly, think about the administration of health education materials. The different names applied to these materials is enough to drive anyone crazy, and it highlights the complicated ins and outs of health info administration that is "disturbed" when someone offers to 'change' it. Some health regions, trusts and authorities only have communications experts look at health information. Forms are written by legal eagles to check for legality first, and communication second (if at all). Before offering to change materials, think about the systems in place...sometimes offering to help a nurse rewrite a health info document. Some of the attitudes I have encountered are: "it's not my job"; "it's fine as it is"; "but I can understand it"; "the patient will understand it once they have read through it a few more times".  My advice, start at the top! Go to the director, owner of the clinic, managers, etc.
 
Also, some people take their writing very personally. For some of my clients, I really have to  tip-toe around their feelings when I take my "red pen" to their writing. Imagine this scenario - you arrive to meet your friend at a gathering, and she has just introduced herself to the entire room. She has talked to hundreds of people and is quite proud of herself for putting her inhibitions aside, and then you notice that she has a huge chunk of spinach in her teeth. How do you tell her? It's the same for some 'unpracticed' writers. Remember that for most people "writing" starts and ends at a quick text message, writing a shopping list or a sticky reminding someone to pick up the dry cleaning.  Some people who write health information do so with the best of intentions, but somewhere along the line they trip up, through no fault of their own. The same feeling your friend would have at having spinach in her teeth is the same feeling I often see reflected in the faces of my clients when they see how much their materials have to be modified in order to meet the standards set out by my department. 
 
For some departments, checking for readability is a "nice to have" rather than a "need to have". I have encountered that a few times in my career. Hurt feelings aside, my response is "you spend hours writing it, hundreds of dollars printing and distributing it, thousands of copies have gone out, and only ten percent of the people who pick it up and read it will actually understand it. How can a system that allows you to reach more than ten percent of your audience be a 'nice to have'?" This always makes the policy makers (and people who control budget purse-strings) sit up and listen to what you are saying.
 
I hope this helps you.
Nicola
ndavies at dthr.ab.ca
 
 
-----Original Message-----
From: healthliteracy-bounces at nifl.gov [mailto:healthliteracy-bounces at nifl.gov]On Behalf Of Janet Sorensen
Sent: Wednesday, March 26, 2008 9:43 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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