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. Health System Patient skills literacy demand
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. offensive 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 6 th -8 th grade for consent forms and other 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: 12 th Grade 4 th Grade Your participation in this You don’t have to be in this study is entirely voluntary. research study. You can You have the right to choose agree to be in the study now not to participate or to and change your mind later. withdraw your participation Your decision will not affect at any point in this study your regular care. Your without prejudice to your doctor’s attitude toward you future health care. will not change. (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 12 th grade reading level. Only one of the 70+ documents reviewed achieved the target grade level (8 th 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 Appendices How the Toolkit can help Checking readability in Word What you should know first Alternative Wording Suggestions Principles of plain language Examples of improved language How to determine reading level Examples of improved formatting Quick Reference Guide Links to other resources Editing Checklist Resources for consent forms Resources for HIPAA forms
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 Revised Flesch-Kincaid grade level = 19.7 Flesch-Kincaid grade level = 8.3 If you are eligible to If you are eligible for the participate in the study, study, we will ask you to every two years we will come in for a similar repeat the initial interview and blood draw assessment procedures every two years. We will at the Center for Health also check your medical Studies, and we will record from time to time to periodically review your see if there is a change. medical record 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 Revised Flesch-Kincaid grade level = 10.2 Flesch-Kincaid grade level = 5.6 Participants assigned to a If you are in a study treatment study treatment group will make group , you will make 10 visits 10 visits over a 7-week period. over a 7-week period. The study These visits will be paid for by will pay for these visits. the study. Regardless of group No matter which group you are assignment , all participants will in , we will call you for three be contacted at 2, 6, and 12 phone surveys that will last months after the start of the about 20 minutes each. These study for about a 20-minute surveys will take place 2, 6, and telephone interview . 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
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