Recommended characteristics and processes for writing lay summaries of healthcare evidence: a co-created scoping review and consultation exercise.

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.

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.

A commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada.

There is a growing number of youth with healthcare needs such as disabilities or chronic health conditions who require lifelong care. In Canada, transfer to the adult healthcare system typically occurs at age 18 and is set by policy regardless of whether youth and their families are ready. When the transition to adult services is suboptimal, youth may experience detrimental gaps in healthcare resulting in increased visits to the emergency department and poor healthcare outcomes. Despite the critical need to support youth with disabilities and their families to transition to the adult healthcare system, there is limited legislation to ensure a successful transfer or to mandate transition preparation in Canada. This advocacy and policy planning work was conducted in partnership with the Patient and Family Advisory Council (PFAC) within the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities (BBD) Project and the CHILD-BRIGHT Policy Hub. Together, we identified the need to synthesize and better understand existing policies about transition from pediatric to adult healthcare, and to recommend solutions to improve healthcare access and equity as Canadian youth with disabilities become adults. In this perspective paper, we will report on a dialogue with key informants and make recommendations for change in healthcare transition policies at the healthcare/community, provincial and/or territorial, and/or national levels.

Supporting patient and public partners in writing lay summaries of scientific evidence in healthcare: a scoping review protocol.

INTRODUCTION: Despite growing interest among patient and public partners to engage in writing lay summaries, evidence is scarce regarding the availability of resources to support them. This protocol describes the process of conducting a scoping review to: (1) summarise the source, criteria and characteristics, content, format, intended target audience, patient and public involvement in preparing guidance and development processes in the available guidance for writing lay summaries; (2) contextualise the available guidance to the needs/preferences of patient and public partners and (3) create a patient and public partner-informed output to support their engagement in writing lay summaries. METHOD AND ANALYSIS: A scoping review with an integrated knowledge translation approach will be used to ensure the collaboration between patient/public partners and researchers in all steps of the review. To meet objective 1, the English language evidence within a healthcare context that provides guidance for writing lay summaries will be searched in peer-reviewed publications and grey literature. All screening and extraction steps will be performed independently by two reviewers. Extracted data will be organised by adapting the European Union's principles for summaries of clinical trials for laypersons. For objectives 2 and 3, a consultation exercise will be held with patient and public partners to review and contextualise the findings from objective 1. A directed content analysis will be used to organise the data to the needs of the public audience. Output development will follow based on the results. ETHICS AND DISSEMINATION: Ethics approval will be obtained for the consultation exercise. Our target audience will be stakeholders who engage or are interested in writing lay summaries. Our dissemination products will include a manuscript, a lay summary and an output to support patient and public partners with writing lay summaries. Findings will be published in a peer-reviewed journal and presented at relevant conferences. OPEN SCIENCE FRAMEWORK REGISTRATION: osf.io/2dvfg.