To the Editor:
An informed public plays a critical role in epidemiology as patients with literacy deficits face obstacles in accessing and using health information and services.1 The National Center for Adult Literacy has found that 36% of the public have health literacy skills lower than an eighth grade equivalent.2 In an attempt to increase access, utility, and dissemination of health-related information, the National Institutes of Health (NIH) recommends that print materials for the public use plain language with a target readability equivalent to the sixth grade level and no greater than eighth grade.3 Despite these recommendations, medical information intended for the public continues to be too complex for most patients to read and understand.4
In 2010, the Patient-Centered Outcomes Research Institute (PCORI) was established by the Affordable Care Act (ACA) to fund and promote consumer-driven research, designed to enhance public access to the health information needed to make decisions consistent with desired outcomes.5 In an attempt to promote access and use of PCORI initiatives’ information, investigators are required to submit a public abstract of their research written in plain language that the general public can understand. These public abstracts are intended to promote general understanding of research, so the success of PCORI’s goal of general accessibility hinges on the readability of these abstracts. Currently, PCORI guidelines provide no quantifiable methods for readability assessment.
This study evaluates how well PCORI has met its plain language mandate by assessing the literacy demand and readability of the posted public abstracts of all funded PCORI research projects between 2012 and 2016. We accessed a total of 780 public abstracts of funded studies from the PCORI website. We applied the Flesch-Kincaid readability measure to the abstracts to establish the grade equivalent demand of the text based on sentence length and syllables per word.6 The mean number of words per sentence was also calculated and compared with the Program for Readability in Science and Medicine (PRISM) recommendation of 15 words or fewer per sentence.7 In addition, common technical terms identified by the Centers for Disease Control and Prevention (CDC) Plain Language Thesaurus for Health Communications as having suitable plain language equivalents were found in the abstracts to demonstrate changes that authors can make to improve the accessibility of their research.8
The findings of this study indicate that current PCORI abstracts are beyond the average literacy level and that protocol is needed to ensure public accessibility. The average reading level of the PCORI abstracts was 15.97 and the average number of words per sentence was 24.86. No abstract met the NIH readability target of 6th grade or below and only one was below the recommended ceiling of 8th grade equivalent. Just 3.2% of the abstracts met the PRISM sentence length recommendation. We found an average of 21.4 technical words with plain language equivalents per abstract (Table).
Although the PCORI mission is to promote consumer-driven research and enhance public access to quality information to make health decisions, abstracts with high literacy demands fall short of ensuring access. To improve PCORI abstract readability and further the goal of enhanced public access to information, this work poses that PCORI should add quantifiable readability metrics to its public abstract requirements, similar to the requirements for informed consent documents. PCORI could provide resources such as the CDC Plain Language Thesaurus and the PRISM toolkit to improve literacy demand and readability. Although we do not know if requiring plain language and reasonable literacy demand for public abstracts will lead to greater public engagement, these criteria ensure the accessibility of the information and thereby promote the objectives of the PCORI mission.
Jacqueline L. Hollada
Johns Hopkins Bloomberg School of Public Health
University of California
Los Angeles, CA
Debra L. Roter
Johns Hopkins Bloomberg School of Public Health
1. Safeer RS, Keenan J. Health literacy: the gap between physicians and patients. Am Fam Physician. 2005;72:463–468.
2. Kutner M, Greenburg E, Jin Y, Paulsen C. The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy. (NCES 2006–483). National Center for Education Statistics. 2006.
3. National Institutes of Health. How to Write Easy-To-Read Health Materials. 2013. Bethesda, MD: National Library of Medicine. Available at: https://medlineplus.gov/etr.html
. Accessed May 9, 2014.
4. Stableford S, Mettger W. Plain language: a strategic response to the health literacy challenge. J Public Health Policy. 2007;28:71–93.
5. Frank L, Basch E, Selby JV; Patient-Centered Outcomes Research Institute. The PCORI perspective on patient-centered outcomes research. JAMA. 2014;312:1513–1514.
6. Kincaid J, Fishburne RP, Rogers R, Chissom B. Derivation of New Readability Formulas (automated Readability Index, Fog Count and Flesch Reading Ease Formula) for Navy Enlisted Personnel. 1975. Memphis, TN: Naval Technical Training Command. Available at: http://www.dtic.mil/dtic/tr/fulltext/u2/a006655.pdf
. Accessed May 10, 2014.