Seattle—Use of confusing medical jargon is a big problem—not only in doctors’ offices but also in medical research studies. People are supposed to give their “informed” consent before participating in research. But being truly informed is hard when most consent forms and research materials exceed recommended readability standards: Many are written at college level, while the average American adult reads at the 8th-grade level.
Today, to help address this problem, a new Web course in using plain language for health research was launched at http://prism.grouphealthresearch.org. Jessica Ridpath, the research communications coordinator at Group Health Research Institute, also presented this new online resource today at the Health Literacy Annual Research Conference, in Bethesda, MD.
October is Health Literacy Month, and last week President Obama signed into law the Plain Writing Act of 2010. The Act requires that government documents be understandable, in “writing that is clear, concise, well-organized, and follows other best practices appropriate to the subject or field and intended audience.”
Like the Plain Writing Act, the new Web course is based on the principles of plain language: a communication style centered on the audience's needs, abilities, and levels of literacy and numeracy. The online training will broaden the reach of the Program for Readability in Science and Medicine, or PRISM. The Web course is freely available to anyone. It is a joint project of Group Health Research Institute and the University of Washington’s Institute for Translational Health Sciences (ITHS). Researchers can see how to use plain language in study materials through the course’s many concrete examples.
“The Web course approximates the best-received parts of our in-person training workshops,” Ms. Ridpath said. “For instance, you can see edits tracked on screen in real time—and then try the same strategies for yourself in similar passages.” In the past five years, she has delivered a dozen customized in-person PRISM trainings at Group Health, the ITHS, Public Health–Seattle & King County, and several professional conferences across the United States, spending from an hour to days working with trainees. Now the online training lets anyone in the world experience the workshop from their own computer. The modular course takes an hour to complete. Users can take it at their leisure: in multiple sessions, or all at once.
“This Web course is the only such resource that focuses on research,” said Ms. Ridpath’s colleague Sarah M. Greene, MPH, a research associate at Group Health Research Institute. “But it teaches techniques that can also be useful in health care and health education.”
“It’s hard for researchers to use plain language when they have to write so differently for academic journals,” said colleague Cheryl J. Wiese, MA, who collaborates with Ms. Ridpath and Ms. Greene on PRISM and co-authored their presentation. Ms. Wiese is a survey director at the University of Michigan Institute for Social Research. “This online training gives them focused, tangible tools to learn how to communicate so that research participants can understand them,” she added. “And that’s just the right thing to do.”
Started in 2005 as an internal project at Group Health, PRISM is a suite of hands-on resources, including an editing service, training workshops, and a Toolkit. The free PDF of the Toolkit is downloaded more often than anything else is on the Group Health Research Institute website, and it is cross-posted on other sites. It illustrates strategies for communicating clearly in written materials for study participants. These materials include informed consent documents, study invitations, letters, and information sheets.
This work aligns with the U.S. Department of Health and Human Services’ 2010 National Action Plan to Improve Health Literacy. The Action Plan seeks to engage organizations, professionals, policymakers, communities, individuals, and families in a linked effort to improve health literacy, because:
Creation of the online training was supported in part by the ITHS grant, which is funded by the National Institutes of Health’s National Center for Research Resources (NCRR). The ITHS will feature the course among their many education resources at http://www.iths.org/education. Here are direct links to free PRISM resources:
Other information, including audio and information diagrams, is available on request.
Kaiser Permanente Washington Health Research Institute (KPWHRI), formerly Group Health Research Institute, improves the health and health care of Kaiser Permanente members and the public. The Institute has conducted nonproprietary public-interest research on preventing, diagnosing, and treating major health problems since 1983. Government and private research grants provide our main funding. Follow KPWHRI research on Twitter, Facebook, Pinterest, LinkedIn, or YouTube. For more information, go to: www.kpwashingtonresearch.org.
The University of Washington (UW)’s Institute for Translational Health Sciences (ITHS) is part of a national consortium, the Clinical and Translational Science Awards (CTSA). It helps researchers obtain the education, resources, and collaborations necessary to translate discoveries into practice. The Institute is a partnership among the UW, Seattle Children’s, the Fred Hutchinson Cancer Research Center (FHCRC), and other local institutions dedicated to improving human health. The Institute is supported by grants UL1 RR025014, KL2 RR025015, and TL1 RR025016 from the NIH National Center for Research Resources.
The National Center for Research Resources (NCRR), a part of the National Institutes of Health, provides laboratory scientists and clinical researchers with the resources and training they need to understand, detect, treat, and prevent a wide range of diseases. NCRR supports all aspects of translational and clinical research, connecting researchers, patients, and communities across the nation: www.ncrr.nih.gov.
Kaiser Permanente is committed to helping shape the future of health care. We are recognized as one of America’s leading health care providers and not-for-profit health plans. Founded in 1945, Kaiser Permanente has a mission to provide high-quality, affordable health care services and to improve the health of our members and the communities we serve. We currently serve more than 12.2 million members in eight states and the District of Columbia. Care for members and patients is focused on their total health and guided by their personal Permanente Medical Group physicians, specialists and team of caregivers. Our expert and caring medical teams are empowered and supported by industry-leading technology advances and tools for health promotion, disease prevention, state-of-the-art care delivery and world-class chronic disease management. Kaiser Permanente is dedicated to care innovations, clinical research, health education and the support of community health. For more information, go to: kp.org/share.