To the Editor:
In their recent letter, Hollada et al.1 correctly highlight the Patient-Centered Outcomes Research Institute's (PCORI) commitment to assuring that the findings from the research we fund can be readily accessed and easily understood by clinicians, patients, and the general public. For evidence to make a difference, we must, as our authorizing law states “convey the findings of research in a manner that is comprehensible and useful to patients and providers in making health care decisions.”2
As Hollada et al.1 note, PCORI asks investigators to submit descriptive summaries of their projects at the time of award for posting on www.pcori.org. We have learned, however, that researchers are unlikely to be expert in plain-language writing, and, as Hollada et al.1 observe, these summaries can be hard to read and comprehend.
Therefore, beginning a year ago, we put in place a substantial public access and reporting initiative to assure that our study descriptions and findings are accessible and comprehensible to members of the public and to professional audiences. We are currently rewriting the summaries of all of our ongoing research projects in plain language, with the first revised summaries to be posted in April 2017. In addition to improving the grade-level readability of the summaries, the revisions will improve their consistency and highlight information that is most important to readers.
As we begin to receive the first results of our funded studies, we will be updating our project summaries to feature study findings and conclusions in both lay and professional language versions. Development of these finalized research abstracts begins with our peer review of study results, which is designed to assess scientific integrity and adherence to our methodology standards. Peer review assures transparency about the limitations of the evidence we release and provides important context for readers to interpret the findings. Of note, patients—as well as content experts and methodologists—review the findings of every PCORI study as part of peer review.
Based on each study’s final report, a team of plain-language writers at our Patient-Centered Outcomes Research Translation Center drafts the professional and public versions of the final abstract, with input from both topic-matter and health-communications experts. The abstracts conform to a format we developed with input from patients and other stakeholders, as well as a panel of experts in health communications and health literacy. The public abstracts are prepared at an eighth grade reading level, targeting Flesh-Kincaid and simple measure of Gobbledygook (SMOG) scores of 8. The drafts then undergo cognitive testing with intended audiences, where our Translation Center verifies understanding of important elements of the study including the reason for undertaking the research, who the participants were, and the findings and their potential use.
We ask each study investigator to review the draft abstracts of their project to confirm technical accuracy. PCORI will post these abstracts on our website within 90 days to assure that our results are available in a timely manner. The public abstract will be available in a downloadable format; we will also make available a Spanish translation of the public abstract and an audio version for the visually impaired.
Hollada et al.1 highlight a critical aspect of PCORI’s mandate with regard to making the findings of our funded research available to all who can use them, including patients and the public, and to convey these results in ways that are meaningful and usable. It is a challenge that we embrace as part of our commitment to improve health care and to provide patients and those who care for them with credible evidence that they can use to make better-informed decisions about the healthcare choices they face.
Joanna E. Siegel
Christopher C. Gayer
Jean R. Slutsky
1. Hollada JL, Zide M, Speier W, Roter DL. Readability assessment of PCORI public abstracts in relation to accessibility. Epidemiology. 2017. doi: 10.1097/EDE.0000000000000650.