Friday, November 02, 2012

Creating Accurate, Accessible, and Actionable Health Materials Easy-reading isn’t enough!

While it is the patient’s responsibility to carry out the doctor’s advice, it is the responsibility of healthcare providers to offer health educational materials that are easy to understand, culturally relevant, and motivating. Written materials still make up the majority of health information for patients, but most are written at too high a reading level for the average patient. In fact, the four common shortcomings of written health material include:

•    Too much information. Long pages crammed with text discourage people with limited reading ability, and obscure the important points for all readers.
•    Too high a reading level. Since many materials are written by people with extensive educational backgrounds, the reading level is simply too high.
•    A lack of interaction, which results in poorer recall.
•    The use of difficult words that are not defined with examples.

While many doctors believe they can solve this problem by simplifying the language of their documents, the truth is that making the text easier to read only marginally improves comprehension among patients with low literacy skills. This is because low-literate patients have different ways of looking at text.

•    If only text is presented, low literate readers may try to form their own visuals in their minds and connect them with the text. This is a complex task, at which many fail.
•    When low-literate patients read, they usually focus on each word rather than on key concepts.
•    Low-literate adults let their eyes wander around the page and have difficulty finding key points.
•    Low-literate patients have trouble scanning text, so they may miss important concepts.

How suitable are your materials for patients with low literacy skills? Will they be able to understand the information provided? A quick way to assess health information is to use the 3 A’s: Accurate, Actionable, and Accessible.

Accurate: Does the information correctly describe the condition or treatment?
Accessible: Is the information not only easily available to your patients, but is it also accessible in terms of its reading level, cultural suitability and relevance?
Actionable: Are there clear action steps provided for the patient to follow?

Three approaches can help answer these questions:

1.    A checklist for easy-to-read health education materials
2.    A readability analysis, and
3.    An analysis using an instrument called Suitability Assessment of Materials.

Let’s begin with the checklist for easy-to-read health education materials:

•    The presentation is attractive. It is clear what the material is about and for whom it is intended.
•    Only one or two objectives are covered – no information overload.
•    The piece uses headers and summaries to organise and reinforce information
•    The writing is active rather than passive
•    The reading level is 5th grade or lower (short words with one or two syllables)
•    The piece uses little or no technical jargon
•    There is ample white space
•    Culturally relevant pictures of people and places are included
•    Interaction is invited with the use of questions or suggested behaviours
•    Bulleted lists are used instead of wordy paragraphs


As you review materials, check off the attributes on the list. You may find that part of the material meets the checklist, while other parts do not. This difference indicates areas that may require extra teaching on your part or supplemental materials. You do not have to discard materials that aren’t perfect, just be aware of their shortcomings and compensate for them. The effectiveness of the materials you use will be increased if you read them aloud to your patients, and highlight important points while doing so.

While medical jargon can be difficult to understand because it often has many syllables and refers to complex technical concepts, what about supposedly simple words we think most people would comprehend?

Multiple interpretations – Words like “may” and “might” are vague and can confuse patients. Scientists know that if a medication may help, it also may not help. However many patients interpret “may” and “might” as “will” and so assume the medication will help. You’ll need to explain the difference.

Acronyms - Acronyms use the first letter of words in a phrase to create a shorthand version of that phrase. For example, CAT refers to Computed Axial Tomography or ADL for Activities of Daily Living. Do not assume your patients know what any of these acronyms mean. To help your patients understand, the first time an acronym is used, explain what it means and write it down for them.

Readability formulas

To check how reader-friendly your text is, you can use a number of online readability analysers. A good resource is “8 Readability Web Tools to Test Your Writing Quality,“ which is available @ http://www.makeuseof.com/tag/writing-reader-friendly-check-8-readability-testing-web-tools/. For a general patient population, you want your materials to be written at a 6th grade level or lower. If you know you have many patients from low socio-economic backgrounds, you may wish to lower this reading level even further.

You might think that readability formulas measure reading ease or comprehension, but they do not. They only count syllables, words, and sentences to calculate a grade level score, and ignore everything else. If the grade level score is high, it means the material is too difficult for most readers. However, a low score does not always mean the material will be easy for readers to understand because short words and sentences are only one of many things that help readers make sense of the document. Formulas cannot measure whether the purpose is clear, the words are familiar, or the explanations make sense. They don’t address whether the main points are easy to find or the formatting guides the reader. They can’t see if the text is too small or the page is too crowded.
   
These issues are better addressed using SAM (Suitability Assessment of Materials), which was developed by Ceci and Len Doak, pioneers in the field of teaching patients with low literacy skills. SAM offers a score (a percentage) that falls into one of three levels: superior, adequate, or not suitable. You can download this book free @  http://www.beginningsguides.com/upload/SAM-for-Beginnings.pdf

There are also commercial organisations that offer paid services to help design patient-friendly materials. For example, Communicate Health (@ http://www.communicatehealth.com) is the website of a team of health literacy experts who provide consulting, writing and editing, user-centred design, and knowledge transfer.


Photonovels

Photonovels are a clever way of reaching out to your patients. These are storybooks, that use photos to tell a story, and they can be created by patients themselves. From Junk Food to Healthy Eating: Tanya's Journey to a Better Life (@ http://www.photonovel.ca), is a good example. This photonovel was written by immigrant women in Canada who created the script and the characters for the story, took the photographs, and constructed the book themselves. As one said, "You don't need English to understand it, you just have to point at the picture and look at it." The photonovel became a useful tool towards greater health literacy because it made the subject matter comprehensible to them.

Immigrant women in Canada, challenged not only by a new culture but a new language, find it harder to take care of themselves. They are a classic example of health illiteracy – and this is a valuable success story of how we can help them to use their own skills to help themselves.

Speaking Books

Books of Hope is a company that publishes “speaking books” that are directly aimed at people with low literacy skills. The books are created in 15 languages and cover 45 important topics such as HIV/AIDS, malaria, immunisations and depression. One of the malaria books was converted into an animated version that can be viewed on a mobile phone. The books are used in India, China, South America, and the USA and over 300,000 have been purchased by sponsors. (@ http://endtheneglect.org/2011/06/speaking-books-bringing-hope-to-low-literacy-populations/)

Comics and Graphic Novels

Medikidz (@ http://www.medikidz.com/) produces comics especially for children. These cover a wide range of topics, ranging from leukaemia, ADHD, swine flu and broken bones. The comics have an engaging story line because they are built around action heroes with whom children can identify. Not only are they medically accurate, they are fun to read and are attractively produced.

If you want additional inspiration as to how artists and doctors are using graphics to discuss health and illness, please visit http://www.graphicmedicine.org/. In addition to reviews of health-related comics, Graphic Medicine offers articles and podcasts.

When it comes to evaluating health materials for your patients, it’s important to not rely on any one tool, especially an electronic tool, to replace your own experience and judgment. Just as we know we can’t depend on an automatic spell-checker to correct all our mistakes, we cannot rely on a machine to assess our materials on its own.

You know your patients better than anyone else, and your patients should play a role in determining the suitability of the materials you use. Please utilise the expertise and assistance of your patients in developing your own materials. I am always amazed by how poorly doctors make use of the extensive skills that their patients have. Patients are the true experts on their illness, and many will be happy to help you develop suitable materials to help educate other patients. Patients are the largest untapped healthcare resource, and doctors need to make better use of them. Some of your patients may be graphic designers; others may be teachers, and others maybe willing to translate your materials into local languages. Ask them for help, and many will be happy to volunteer their services. By working together, you can ensure your materials are having a positive impact on health literacy, and ultimately the health of your patients.

It breaks my heart when I see how patients are duped and misled. Sadly, given the fact that the healthcare industry has become a profit-making commercial enterprise, there are lots of players who are quite happy to varnish the truth. These include pharmaceutical companies who want to sell their drugs; medical device manufacturers who want to promote their wares; quacks who want to make money; and hospitals and clinics who want to fill their beds. It’s important that patients have access to trusted reliable sources of information – and patients would rather get this information from their doctor, whom they trust.

All doctors are teachers and in fact, the word doctor itself is derived from the word docere, which means to teach. One of the key responsibilities of a doctor is to teach his patients - both about his illness, as well as how to remain healthy! Since I'm an IVF specialist, my focus is on educating patients about IVF and infertility. My personal blog @ http://www.blog.drmalpani.com is the viewpoint of a practicing opinionated IVF physician, and while I don’t claim that I have all the answers, I believe viewpoint can provide valuable insights for infertility couples.

I like teaching and I think I am good at it. I get a lot of positive feedback and encouragement from my patients, who tell me how helpful they find my blog and our websites. Thanks to the ubiquity of the Internet, I can now reach out to thousands of patients from all over the world, instead of having to teach just one patient at a time. I like being able to leverage technology, because it allows me to positively influence the lives of many more couples than I would have been able to, had I been restricted to educating patients in real life.

There are a lot of other advantages as well. Thanks to my blog, I'm forced to learn, keep up-to-date and sharpen my thinking. Every time I write, I also have to do my homework to make sure I am providing patients with reliable information. There are many controversial issues in IVF, and I have to make sense of fairly complex issues when I write a post. Articulating where I stand and presenting my viewpoint in a public forum, where others can critique it, helps me to clarify my thought processes. As Sir Francis Bacon said, “ Reading maketh a full man, conference a ready man, and writing an exact man.”

Teaching patients is good for my professional reputation. It is also very good for my practice, and infertile patients who want high quality personalised medical care from an expert will come to our clinic from all over the world.

Teaching patients has taught me to be creative. While I personally prefer learning by reading books, I have found that not many patients like reading, because they find it boring. This is why I have partnered with artists, film makers and graphic companies to repackage the content of the book and create comic books, e-learning courses and videos – all of which form an unique library of novel patient educational materials which patients appreciate and other doctors admire (@ www.ivfindia.com). Making services more patient-centred creates a lot of energy and fun. Patients are the experts of their lives and have a lot of power – after all, they are the fuel of the engine of patient-centred innovations. “Let patients help” was the title of the performance of e-Patient Dave at the TEDx conference in Maastricht. Our patients have shown that they are ready for this new participative role. We as doctors should trust them and should realise that listening to patients is the best catalyst for change.

No comments:

Post a Comment

LinkWithin

Related Posts Plugin for WordPress, Blogger...