Background: Researchers are ethically obliged to ensure that consent forms are understandable to the subject, and most institutional review boards (IRBs) recommend a reading level of 6th-8th grade for informed consent documents—a standard consistent with literacy assessments showing an average 8th-grade reading ability among American adults. But a 2003 study found that college-level research consents were common at US medical schools—and that only 8% of forms met institutional readability standards.
Program background: Group Health Research Institute (GHRI) created the Program for Readability In Science & Medicine (PRISM) in 2005 to address this problem by bringing accessible, customized readability resources to the research community. Since then, PRISM training and editing services have helped GHRI researchers consistently meet the 8th-grade reading level target recommended by most IRBs. Our newest public-domain resource, PRISM Online Training, was launched with grant funding in October 2010 to help other institutions do the same.
Evaluation Methods and Results: We based the online training course on the PRISM Readability Toolkit and more than a dozen in-person PRISM training workshops with researchers and IRB professionals. The hour-long online tutorial includes: 1) Background on health literacy; 2) Readability challenges in research and links to helpful tools; 3) Plain language strategies and pre-post examples from participant materials; 4) Interactive editing examples and exercises. Registration for the course is required and a 10-question evaluation is optional. Although we designed the training specifically for researchers, a wide range of health care professionals are taking it. After 11 months in the field, 506 users from institutions across the US and abroad had registered, including: 214 (43%) investigators or research staff; 82 (16%) health educators; 41 (8%) clinicians; 36 (7%) IRB administrators or members; and 35 (7%) medical writers/editors. Four-hundred seventeen users answered an optional question about how they heard about the course, revealing that 206 (49%) learned about it through a colleague or on a listserv. One-hundred forty-seven completed the evaluation and provided consistently high ratings, including: 135 (92%) agreed or strongly agreed that the course was a good use of their time; 135 (92%) agreed or strongly agreed that they learned readability strategies they could immediately apply; and 137 (93%) agreed or strongly agreed that they would recommend the course to others. Boosting skills and knowledge was the most-cited reason for taking the course; fulfilling an institutional requirement was the least-cited reason.
Conclusions: Few readability resources address specific challenges posed in research—which may explain why easy-to-read consent forms remain the exception rather than the rule. PRISM online training was created to help research institutions change this trend. To date, this free training has shown to be an effective way to boost the plain language skills of the research community—and other health professionals.
Implications for research and/or practice: Proactive dissemination is essential to widespread implementation of this helpful tool. Word-of-mouth and listserv recommendations have been more effective drivers of dissemination than targeted conference presentations or newsletter announcements. Enhancing individual skills is a more common motivator for taking the course than fulfilling institutional requirements.