Background: Lay summaries (LSs) of scientific evidence are critical to sharing research with non-specialist audiences. This scoping review with a consultation exercise aimed to (1) Describe features of the available LS resources; (2) Summarize recommended LS characteristics and content; (3) Outline recommended processes to write a LS; and (4) Obtain stakeholder perspectives on LS characteristics and writing processes.
Methods: This project was a patient and public partner (PPP)-initiated topic co-led by a PPP and a researcher. The team was supported by three additional PPPs and four researchers. A search of peer-reviewed (Ovid MEDLINE, Scopus, Embase, Cochrane libraries, CINAHL, PsycINFO, ERIC and PubMed data bases) and grey literature was conducted using the Joanna Briggs Institute Methodological Guidance for Scoping Reviews to include any resource that described LS characteristics and writing processes. Two reviewers screened and extracted all resources. Resource descriptions and characteristics were organized by frequency, and processes were inductively analyzed. Nine patient and public partners and researchers participated in three consultation exercise sessions to contextualize the review findings.
Results: Of the identified 80 resources, 99% described characteristics of a LS and 13% described processes for writing a LS. About half (51%) of the resources were published in the last two years. The most recommended characteristics were to avoid jargon (78%) and long or complex sentences (60%). The most frequently suggested LS content to include was study findings (79%). The key steps in writing a LS were doing pre-work, preparing for the target audience, writing, reviewing, finalizing, and disseminating knowledge. Consultation exercise participants prioritized some LS characteristics differently compared to the literature and found many characteristics oversimplistic. Consultation exercise participants generally supported the writing processes found in the literature but suggested some refinements.
Conclusions: Writing LSs is potentially a growing area, however, efforts are needed to enhance our understanding of important LS characteristics, create resources with and for PPPs, and develop optimal writing processes.
Keywords: Characteristics; Cocreation; Creation processes; Healthcare evidence; Lay summary; Patient partners; Plain language summary; Public partners.
This study was suggested by a patient partner to place attention on the role patient and public partners (PPPs) could play in developing lay summaries. A lay summary (LS) is a summary of a research project written for members of the public, including patients. A lot of information is written about recommendations for LSs, but none of it has been summarized. This study: (1) Pulled together and summarized all existing resources that made recommendations on features of LSs and/or the steps for writing them; and (2) Conducted meetings with people interested in LSs (PPPs and researchers) to gather their perspectives on this summary of resources. The study engaged PPPs in all aspects, including co-leadership. We found 80 resources on LSs. Almost all (95%) of the resources were written by researchers for researchers, with only 18% involving PPPs. The most common recommendations were to avoid jargon (78%) and remove unnecessary and complex words (60%). Only 13% of the resources had information about the steps for writing a LS. People in our meetings did not always agree with the recommended LS characteristics and found them overly simplistic. They felt that identifying and writing for the intended audience of the LS was important, every study should have a LS, PPPs should have the opportunity to be involved, and greater attention should be paid to the steps involved in writing a LS. Lay summary development is a complex, multistep process requiring the inclusion of PPPs for their irreplaceable perspectives and contributions.
© 2023. The Author(s).