SEATTLE — The doctor’s mouth opens, and “medicalese” pours forth: words like “pyrosis” and “myocardial infarction.” The patient’s eyes glaze over. If only the doctor said “heartburn” or “heart attack,” the patient could learn what caused the chest pain.
This failure to communicate is all too familiar. In 2005, Jessica Ridpath noticed it happening when health care researchers asked people to consider taking part in studies.
“Informed consent means people understand what they’re agreeing to,” said Ridpath. “But most consent forms are too complex for the reading abilities of the people they’re supposed to inform.” A slam poet and language lover, Ridpath is the research communications coordinator at Group Health Center for Health Studies. She just published her first article in the July/August American Journal of Health Promotion.
Ridpath worried that unreadable consent forms were hindering informed decision making — and raising risks for participants and research institutions alike. So four years ago she created the Project to Review and Improve Study Materials, or PRISM. Her article describes how PRISM evolved. First it was a short-term internal training initiative to boost consent form readability. Since then, PRISM has expanded into an enduring suite of hands-on resources. It includes a customizable training workshop and an editing service. Its centerpiece is a Toolkit that illustrates strategies for communicating clearly in written materials for study participants, such as informed consent documents, study invitations, letters, and information sheets.
The Toolkit is based on plain language — a communication style centered on the audience’s needs and abilities. Researchers can see how to use plain language in study materials through the Toolkit’s many concrete examples, including an alternative word list. Here’s a brief excerpt:
Instead of: Try this:
Abdomen: Belly
Abrasion: Scrape
Absorb: Soak up
Abstain from: Don’t use
Accomplish: Carry out
Accrue: Collect
You can download a free PDF of the Toolkit at www.centerforhealthstudies.org/capabilities/readability/readability_home.html.
PRISM swiftly drew interest from U.S. researchers and other health care professionals. They downloaded the Toolkit 2,000 times in its first year on CHS’ Web site. Ridpath and colleagues have presented PRISM resources at more than 10 professional conferences nationwide. She has led training workshops for external and non-research audiences, including Public Health?Seattle & King County. Her training of Group Health patient education writers sparked an organization-wide plain language initiative, resulting in revisions to dozens of patient letters, brochures, and consent forms.
Efforts to give health information a plain language makeover have been gaining steam across health care since the Institute of Medicine’s Health Literacy: A Prescription to End Confusion in 2004. This report concluded traditional health information is too complex for roughly 93 million Americans?half the adult population?to understand.
Since then, the American Medical Association and federal government have also focused on health literacy. Many plain language resources aimed at improving health literacy have sprung up online. Most focus on specific populations or illnesses. The PRISM Toolkit fills a gap in the range of tools already available: practical guidance addressing special challenges that researchers face when communicating with study participants.
“The Toolkit is unique for its emphasis on research,” said article co-author Sarah M. Greene, MPH, a research associate at Group Health Center for Health Studies. “But it can also be extended for use in health care and education.” PRISM may help meet the Healthy People 2020 objectives: For the first time, they’ll include health literacy targets and measures.
“Centering research materials on patients is simply the right thing to do,” said co-author Cheryl J. Wiese, MA, manager of the Survey Research Program at Group Health Center for Health Studies. “Anecdotally, we think using plain language has helped us recruit study participants.”
As part of the PRISM editing service, Ridpath tracks readability improvements to study consent forms and other participant materials. To date, her readability editing has dropped reading level by an average of at least 2 grades, with most research materials now between 6th- and 8th-grade reading levels. And these scores don’t account for additional improvements from designing and reorganizing the documents.
Here are links to a video of Ridpath (www.ghcnews.org) and her recent presentation to the University of Washington’s Institute of Translational Health Sciences (http://univwashington.na4.acrobat.com/p65346670/).
Other audio and information diagrams are available on request.
Group Health Center for Health Studies
Founded in 1947, Group Health Cooperative is a Seattle-based, consumer-governed, nonprofit health care system. The Group Health Center for Health Studies is Group Health’s research institute. For 25 years, the Center has conducted nonproprietary public-interest research on preventing, diagnosing, and treating major health problems. Government and private research grants provide its main funding.
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