PRISM Readability Training Workshop Plain language strategies and - - PowerPoint PPT Presentation

PRISM Readability Training Workshop

Plain language strategies and resources for research professionals Institute for Translational Health Sciences August 25, 2009

Jessica Ridpath, Research Communications Coordinator Group Health Center for Health Studies (soon to be Group Health Research Institute)

The Group Health research setting

Group Health Cooperative

• Based in Seattle, founded in 1947
• A consumer-governed, non-profit, integrated health care delivery

system

• We currently serve ~600,000 members in Washington and Idaho

Group Health Center for Health Studies (CHS)

• 50+ faculty, ~200 active grants at any given time
• Clinical and health services research focused on diagnosis,

treatment, and prevention

• Funded primarily by federal and foundation grants
• Typical projects recruit from our health plan membership
• Partner site in the ITHS Community Outreach Research Translation

Program for Readability In Science & Medicine (PRISM)

Plain language training, tools, and consultation created for the research community

• Evolved from a short-term training initiative at CHS
• Colleagues: Sarah Greene, MPH & Cheryl Wiese, MA
• Three primary resources:
• PRISM Readability Toolkit (www.tinyurl.com/prismtoolkit)
• Editing service
• Customizable training workshop

For more about PRISM, see the handout provided.

Overview of today’s workshop

• Brief definitions: health literacy, readability, and plain

language

• What’s the problem with research consent forms?
• Using plain language to boost consent form readability
• The PRISM Toolkit and other resources
• Examples from actual consent forms
• Editing exercises

If time…

• Using plain language to make your research materials (invitation

letters, information sheets, study results) more meaningful to the target audience

What is health literacy?

Health literacy is the communication component of health care:

• the ability to find, understand, and act on health

information.

• an interaction between patients and the health care

system.

Patient skills System demand Health literacy

What is plain language?

Plain language is one way to help ease the burden of limited health literacy:

• communication the audience can understand the first

time they read or hear it

• focused on what the audience needs to know
• based on terms, techniques, and concepts that the

audiences finds meaningful

• a tried-and-true method shown to improve outcomes

and save costs in other industries*

* Must see: w w w .plainlanguage.gov/ w hyPL/ benefits

What is plain language? (cont.)

Plain language is not...

• dumbing it down. It’s using clear, meaningful

communication that “lands right” with your audience.

• ffensive to well-educated people. Studies have

shown that people of all education levels prefer simple, concise language.

• impossible. Successful plain language movements are

taking place in the medical, legal, and financial sectors...even in the state and federal governments!

What is readability?

Readability is the ease with which text can be read

Factors that affect overall readability:

• Vocabulary
• Sentence structure
• Page design and formatting
• Amount of information
• Order and organization of content
• Degree to which the content that is meaningful and interesting

Usually expressed as a numerical score—often a grade-level

• Many formulas available, but they only measure bullets 1 and 2

“Hidden” communication gaps and barriers in health care*

Most people have probably had trouble:

• Remembering exactly what their doctor said to do after

an appointment

• Understanding written or spoken treatment

recommendations

• Figuring out how to take a medicine correctly
• Finding their way around a clinic or hospital
• Reading a consent form

* Must see: AMA Health Literacy Kit ( DVD)

How do consent forms for health research measure up?

Most institutional review boards (IRBs) recommend reading levels of 6th-8th grade for consent forms and

• ther participant materials.

However... Only 8% of research consents at US medical schools meet their own readability standards.

• Average reading level for consent forms = between 10.6

and college-level (depending on formula used)

(Paasche-Orlow, et al. NEJM, 348:8, Feb 20, 2003)

Putting research information in plain language

Typical consent language at different grade levels: 4th Grade You don’t have to be in this research study. You can agree to be in the study now and change your mind later. Your decision will not affect your regular care. Your doctor’s attitude toward you will not change. 12th Grade Your participation in this study is entirely voluntary. You have the right to choose not to participate or to withdraw your participation at any point in this study without prejudice to your future health care.

(Paasche-Orlow, et al. NEJM, 348:8, Feb 20, 2003)

How do consents and other print materials at CHS measure up?

Before PRISM… Readability analysis of participant materials from 32 studies fielded before 2005:

• Average grade level = 11.2.
• Nearly one-third of written consent forms were at or above a 12th

grade reading level.

• Only one of the 70+ documents reviewed achieved the target grade

level (8th grade).

Why aren’t we meeting our reading level targets?

Despite 3+ decades of discussion by researchers and ethicists alike, we’ve seen little improvement in consent form readability. Consider our unique environment:

• Accustomed to writing for the scientific community
• Medical jargon PLUS research terminology
• Complicated study procedures
• Confusing privacy laws
• Institutionally-mandated language geared toward protection from

liability Writing research consent forms in plain language is not as easy as “just doing it.”

There is no “one size fits all” plain language solution for research materials

Readability resources for research materials—especially consent forms—must be flexible and adaptable.

• Language that may be mandated by the institution, the

sponsor, or the reviewing IRB

• Key details that vary by study, such as eligibility

requirements, study procedures, and confidentiality information

The PRISM Readability Toolkit

Contents How the Toolkit can help What you should know first Principles of plain language How to determine reading level Quick Reference Guide Editing Checklist Resources for consent forms Resources for HIPAA forms Appendices Checking readability in Word Alternative Wording Suggestions Examples of improved language Examples of improved formatting Links to other resources

Four principles of plain language and strategies to support them

#1 – Use language your audience can easily understand

• Choose common, everyday words
• Replace or define medical and research jargon
• Check the reading level

Readability formulas are useful as an estimating tool

But beware of their limitations

• They don’t factor in overall organization, formatting, or

page density

• Not all short words are familiar or well-understood
• Using the automated tools in Microsoft Word

is easybut they may overrate readability in some cases

• Getting the most accurate results requires an

investment of time and/or resources

Example #1

Original

Flesch-Kincaid grade level = 19.7

If you are eligible to participate in the study, every two years we will repeat the initial assessment procedures at the Center for Health Studies, and we will periodically review your medical record to see if there is a change.

Revised

Flesch-Kincaid grade level = 8.3

If you are eligible for the study, we will ask you to come in for a similar interview and blood draw every two years. We will also check your medical record from time to time to see if there is a change.

Four principles of plain language and strategies to support them (cont.)

#2 – Write in a conversational style, as if you were speaking

• Use active voice.
• Write in the first-person using “I,” “we,” and “you.”
• Read your document out loud.

Example #2

Original

Flesch-Kincaid grade level = 10.2

Participants assigned to a study treatment group will make 10 visits over a 7-week period. These visits will be paid for by the study. Regardless of group assignment, all participants will be contacted at 2, 6, and 12 months after the start of the study for about a 20-minute telephone interview.

Revised

Flesch-Kincaid grade level = 5.6

If you are in a study treatment group, you will make 10 visits

• ver a 7-week period. The study

will pay for these visits. No matter which group you are in, we will call you for three phone surveys that will last about 20 minutes each. These surveys will take place 2, 6, and 12 months after you join the study.

Four principles of plain language and strategies to support them (cont.)

#3 – Organize and filter content with your readers’ needs in mind

• Use short sentences.
• Limit paragraphs to one main topic.
• Put the right amount of information in the right place.
• Consider your audience—their literacy level, age,

culture, ethnicity, or health conditions.

• Ask someone unfamiliar with your project to read your

materials

Example #3 (study invitation letter)

Original

Flesch-Kincaid grade level = 13.0

Can you take five minutes to provide information that will help plan an important study to aid people with arthritis pain and problems getting a good night’s sleep? I am an investigator at Group Health Center for Health Studies who is planning a major study to test new ways of helping people with arthritis pain and sleep problems.

Revised

Flesch-Kincaid grade level = 6.2

Can you take five minutes for a study about helping people with arthritis get a good night’s sleep? If you have arthritis, you may know what it’s like to have trouble sleeping. I am a researcher at Group Health Center for Health Studies. We are planning a major study about arthritis pain and sleep problems.

Four principles of plain language and strategies to support them (cont.)

#4 – Format your document so that it looks easy to read.

• Use ample white space and margins.
• Break up chunks of dense copy.
• Give your readers “road signs” to help them identify

topic areas.

• Emphasize key information using bold, color, or large

font.

Why consent forms are especially challenging

• Regulated by federal guidelines—they are certain things we must

say and other things we can’t say

• Further regulated by Institutional Review Boards (IRBs)
• Risk of liability
• Exhaustive description of study procedures
• Multiple investigators and institutions

Tips for avoiding common pitfalls in consent forms

• Be wary of cutting and pasting from old consent forms
• Consider limited numeracy skills when describing risk

and benefit probabilities

• Watch closely for dense formatting, passive voice, and

words that have multiple meanings

• Keep consent forms reasonably short by sticking to the

required elements of informed consent

• Look out for key details buried in long paragraphs

How can we help make statistical information more clear for non-scientists?

The International Cancer Screening Network suggests strategies to help make risk information understandable:

• Use visual aids, such as systematic ovals.
• Use the smallest possible denominator, for instance, report rates

per 100 instead of 100,000.

• Use the same denominator when comparing different probabilities.

National Cancer Institute (NCI). Designing print materials: A communication guide for breast cancer screening: NIH, 2007. NIH Publication No. 07-6100. http://appliedresearch.cancer.gov/icsn/publications/guide.html *Must see: Gigerenzer, et. al., 2008: “Helping Doctors and Patients Make Sense of Health Statistics”

Watch out for words that have multiple meanings

Excerpt from study results letter to participants (original): This study was designed test whether a medication named Lasofoxifene was safe and would decrease the risk of bone fractures related to osteoporosis and prevent breast cancer and coronary heart disease in women with osteoporosis.

Watch out for words that have multiple meanings (cont.)

Excerpt from study results letter to participants (revised): This study was designed to find out if taking a medication called Lasofoxifene was a safe way to help women with osteoporosis. We looked at whether taking this medication would decrease a woman’s chances of having:

• bone fractures
• breast cancer
• heart disease and other related problems, such as heart attacks

and strokes

What do people hear when we say “risk”?

Consent excerpt (original): Will you keep my information confidential? We won’t use your name or other details about you when we report the results of this study. We won’t give the information we collect about you to your health care team unless you ask us to. But if we think you may be at risk from a medical condition, we are required to get help for you. Are there any risks to me? The main risk of being in this study is loss of confidentiality. It’s possible that someone other than the researchers could find out you were in the study or see your study information. But our research team will take every step to protect your confidentiality, so we think this risk is very low.

What do people hear when we say “risk”? (cont.)

Consent excerpt (original): Will you keep my information confidential? We won’t use your name or other details about you when we report the results of this study. We won’t give the information we collect about you to your health care team unless you ask us to. But if we think you may be in danger from a medical condition, we are required to get help for you. Can anything bad happen to me from being in this study? Every research study involves some risk to your confidentiality. It’s possible that someone other than the researchers could find out you were in the study or see your study information. But our research team will take every step to protect your confidentiality, so we think this risk is very low.

“The hardest thing about writing is organizing your thoughts.”

Common format for written communications:

• Statement of issue
• Background information (history of issue)
• Supporting details
• What we, the authors, are doing about it
• How the issue affects the reader
• What the reader should do next

Adapted from Don Glickstein, Group Health, 1/00

“The hardest thing about writing is organizing your thoughts.”

How written communications should be organized:

What’s happening?

How does it affect me?

What must I do?

Details

Adapted from Don Glickstein, Group Health, 1/00

After PRISM… Data from the PRISM editing service

94 unique materials edited Oct 2005 – Dec 2008

• Average original Flesch-Kincaid grade level (n=94):

Before editing: 9.9 (range 5.8 - 14.5) After editing: 7.7 (range 5.0 – 10.3)

• Among the 27 consents:

Before editing: 10.8 (range 7.7 – 15.1) After editing: 8.2 (range 6.3 – 10.0)

The most important things to remember when writing in plain language...

It’s just as much editing as it is writing...and just as much art as it is science.

• Be prepared for an iterative process and/or multiple rounds of

editing.

• Think creatively, and don’t be afraid to try new ideas.

It’s a continual process of improvement.

• Your skills will improve dramatically with practice.
• It may be impossible to achieve “perfect” plain language writing—

don’t aim for perfection, aim to improve your document each time you edit it.

• There are MANY resources available to help you when you get

stuck.

Thank you!

Feel free to contact the PRISM team anytime: prism@ghc.org Jessica Ridpath Sarah Greene Cheryl Wiese ridpath.j@ghc.org greene.sm@ghc.org wiese.c@ghc.org 206-287-2032 206-287-2989 206-442-4041 Download the PRISM Toolkit at www.tinyurl.com/prismtoolkit Or at www.grouphealthresearch.org click on “Our capabilities” in the left-hand navigation bar