A multistakeholder development process to prioritize and translate COVID-19 health recommendations for patients, caregivers and the public. A case study of the COVID-19 recommendation map

Pottie, Kevin; Smith, Maureen; Matthews, Micayla; Magwood, Olivia; Kredo, Tamara; Scott, Sarah; Bayliss, Kerin; Saad, Ammar; Haridas, Rinila; Detambel, Nicole; Motilall, Ashley; Tan, Yvonne; Steinberg, Sally; Litynska, Justyna; Dietl, Bart; Iorio, Alfonso; Revéiz, Ludovic; Welch, Vivian; Klugar, Miloslav; Mbuagbaw, Lawrence; Rojas, María Ximena; Flórez, Iván D.; Lotfi, Tamara; Qaseem, Amir; Mathew, Joseph L; Akl, Elie A.; Tugwell, Peter

doi:10.1016/j.jclinepi.2022.04.012

Cited by 9 publications

(10 citation statements)

References 18 publications

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“…We used the following 2 COVID-19 recommendations: (1) “the World Health Organization suggests that people with comorbidities that increase their risk for severe illness when infected with COVID-19 should take the Pfizer-BioNTech vaccine to protect against COVID-19” and (2) “the Centers for Disease Control and Prevention and the Advisory Committee on Immunization Practices recommended that people aged 16 years and older should get 2 doses of the Pfizer-BioNTech COVID-19 vaccine.” We refined previously developed PLR templates through pretrial engagement work with Canadian youth advisors (eAppendix 3 in Supplement 2). The PLR information was extracted from the original SLVs using a process that we developed as part of the RecMap work; the draft PLR was edited by a clinical expert (K.P.)…”

Section: Methodsmentioning

confidence: 99%

“…In response to the surge of COVID-19 guidelines, we created a global catalog, the COVID-19 map of recommendations and gateway to contextualization (RecMap), which aims to identify credible COVID-19 guidelines, extract relevant information, and provide high-quality guidance in plain language for the public . To promote public autonomy in COVID-19 decision-making, we developed a process to draft COVID-19 plain language versions of recommendations (PLR) and publish them on the RecMap website …”

Section: Introductionmentioning

confidence: 99%

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Plain Language vs Standard Format for Youth Understanding of COVID-19 Recommendations

Stallwood,

Sammy,

Prebeg

et al. 2023

JAMA Pediatr

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ImportanceTo ensure that youths can make informed decisions about their health, it is important that health recommendations be presented for understanding by youths.ObjectiveTo compare understanding, accessibility, usability, satisfaction, intention to implement, and preference of youths provided with a digital plain language recommendation (PLR) format vs the original standard language version (SLV) of a health recommendation.Design, Setting, and ParticipantsThis pragmatic, allocation-concealed, blinded, superiority randomized clinical trial included individuals from any country who were 15 to 24 years of age, had internet access, and could read and understand English. The trial was conducted from May 27 to July 6, 2022, and included a qualitative component.InterventionsAn online platform was used to randomize youths in a 1:1 ratio to an optimized digital PLR or SLV format of 1 of 2 health recommendations related to the COVID-19 vaccine; youth-friendly PLRs were developed in collaboration with youth partners and advisors.Main Outcomes and MeasuresThe primary outcome was understanding, measured as the proportion of correct responses to 7 comprehension questions. Secondary outcomes were accessibility, usability, satisfaction, preference, and intended behavior. After completion of the survey, participants indicated their interest in completing a 1-on-1 semistructured interview to reflect on their preferred digital format (PLR or SLV) and their outcome assessment survey response.ResultsOf the 268 participants included in the final analysis, 137 were in the PLR group (48.4% female) and 131 were in the SLV group (53.4% female). Most participants (233 [86.9%]) were from North and South America. No significant difference was found in understanding scores between the PLR and SLV groups (mean difference, 5.2%; 95% CI, −1.2% to 11.6%; P = .11). Participants found the PLR to be more accessible and usable (mean difference, 0.34; 95% CI, 0.05-0.63) and satisfying (mean difference, 0.39; 95% CI, 0.06-0.73) and had a stronger preference toward the PLR (mean difference, 4.8; 95% CI, 4.5-5.1 [4.0 indicated a neutral response]) compared with the SLV. No significant difference was found in intended behavior (mean difference, 0.22 (95% CI, −0.20 to 0.74). Interviewees (n = 14) agreed that the PLR was easier to understand and generated constructive feedback to further improve the digital PLR.Conclusions and RelevanceIn this randomized clinical trial, compared with the SLV, the PLR did not produce statistically significant findings in terms of understanding scores. Youths ranked it higher in terms of accessibility, usability, and satisfaction, suggesting that the PLR may be preferred for communicating health recommendations to youths. The interviews provided suggestions for further improving PLR formats.Trial RegistrationClinicalTrials.gov Identifier: NCT05358990

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Plain Language vs Standard Format for Youth Understanding of COVID-19 Recommendations

Stallwood,

Sammy,

Prebeg

et al. 2023

JAMA Pediatr

Self Cite

View full text Add to dashboard Cite

show abstract

“…To enhance the understanding of health recommendations by the public, we developed a multi-stakeholder process to draft, edit, and publish plain language recommendations (PLRs) [2]. Until now, plain language versions of recommendations have been poorly explored, and our work on the RecMap indicates an absence of this critical knowledge mobilization tool for the general public, including youth, adults, and parents [3].…”

Section: Introductionmentioning

confidence: 99%

Knowledge mobilization activities to support decision-making by youth, parents, and adults using a systematic and living map of evidence and recommendations on COVID-19: protocol for three randomized controlled trials and qualitative user-experience studies

Charide

Stallwood

Munan

et al. 2023

Trials

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Introduction The COVID-19 pandemic underlined that guidelines and recommendations must be made more accessible and more understandable to the general public to improve health outcomes. The objective of this study is to evaluate, quantify, and compare the public’s understanding, usability, satisfaction, intention to implement, and preference for different ways of presenting COVID-19 health recommendations derived from the COVID-19 Living Map of Recommendations and Gateway to Contextualization (RecMap). Methods and analysis This is a protocol for a multi-method study. Through an online survey, we will conduct pragmatic allocation-concealed, blinded superiority randomized controlled trials (RCTs) in three populations to test alternative formats of presenting health recommendations: adults, parents, and youth, with at least 240 participants in each population. Prior to initiating the RCT, our interventions will have been refined with relevant stakeholder input. The intervention arm will receive a plain language recommendation (PLR) format while the control arm will receive the corresponding original recommendation format as originally published by the guideline organizations (standard language version). Our primary outcome is understanding, and our secondary outcomes are accessibility and usability, satisfaction, intended behavior, and preference for the recommendation formats. Each population’s results will be analyzed separately. However, we are planning a meta-analysis of the results across populations. At the end of each survey, participants will be invited to participate in an optional one-on-one, virtual semi-structured interview to explore their user experience. All interviews will be transcribed and analyzed using the principles of thematic analysis and a hybrid inductive and deductive approach. Ethics and dissemination Through Clinical Trials Ontario, the Hamilton Integrated Research Ethics Board has reviewed and approved this protocol (Project ID: 3856). The University of Alberta has approved the parent portion of the trial (Project ID:00114894). Findings from this study will be disseminated through open-access publications in peer-reviewed journals and using social media. Trial registration Clinicaltrials.gov NCT05358990. Registered on May 3, 2022

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“…To enhance understanding of health recommendations by the public, we developed a multi-stakeholder process to draft, edit, and publish plain language recommendations (PLRs) [2]. Until now, plain language versions of recommendations have been poorly explored, and our work on the RecMap indicates an absence of this critical knowledge mobilization tool for the general public, including youth, adults, and parents [3].…”

Section: Introductionmentioning

confidence: 99%

Knowledge mobilization activities to support decision-making by youth, parents, and adults using a systematic and living map of evidence and recommendations on COVID-19: protocol for three randomized controlled trials and qualitative user-experience studies

Charide

Stallwood

Munan

et al. 2022

Preprint

Self Cite

View full text Add to dashboard Cite

IntroductionThe COVID-19 pandemic underlined that guidelines and recommendations must be made more accessible and more understandable to the general public, including adults, parents, and youth, to improve health outcomes. The objective of this study is to the public’s (youth, parents, and adult populations) understanding, usability, satisfaction, intention to implement, and preference for different ways of presenting COVID-19 health recommendations derived from the COVID-19 Living Map of Recommendations and Gateway to Contextualization (herein referred to as the RecMap).Methods and AnalysisThis is a protocol for a mixed-methods study. We will conduct a pragmatic allocation-concealed, blinded superiority randomized controlled trial (RCT) in three populations: adults (21 years of age or older), parents (18 years or above and are a parent or legal guardian of a child under 18 years old), and youth (15 to 24 years old), with at least 240 participants in each population. The trial will consist of an online survey and optional one on one interview. Prior to initiating the RCT, all PLRs were refined with relevant stakeholder input. In each population group, the intervention arm will receive a PLR format while the control arm will receive the original recommendation format as originally published by the guideline organizations (herein referred to as Standard Language Version). Our primary outcome is understanding, and our secondary outcomes are accessibility and usability, satisfaction, intended behavior, and preference for the two recommendation formats. Each population’s results will be analyzed separately. We will pool the results across populations using meta-analysis, and also explore potential interaction and subgroup effects within each population. At the end of each survey, participants will be invited to participate in a one-on-one semi-structured interview to explore reasons for their choices and learn for future research. All interviews will be analyzed using thematic analysis. Interpretation will be iterative as data coding proceeds.Ethics and DisseminationThrough Clinical Trials Ontario (CTO), the Hamilton Integrated Research Ethics Board has reviewed and approved this protocol (Project ID: 3856). The University of Alberta will also be submitting for ethics approval. All potential participants will be required to provide informed consent. The findings from this study will be disseminated through open-access publications in peer-reviewed journals.Strengths and limitations of this studyWe are following a mixed methods approach: randomized controlled trial and qualitative interviews. The qualitative results will supplement and help explain our quantitative findings.This protocol is reported in accordance with the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT), which enhances transparency and completeness. The trial uses previously validated outcomes from similar trials. This will strengthen the credibility of our results.Our study is testing an evaluated PLR format, which makes our intervention stronger, and is recruiting internationally, which ensures the inclusion of a diverse population.Recruitment will take place online using social media, and data will be collected using an online survey. This allows for self-selection and limits accessibility to those who have no or limited digital access, which in turn limits generalizability.While the recommendations are offered in multiple languages through the RecMap, the study is only testing English Plain Language Recommendations.

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A multistakeholder development process to prioritize and translate COVID-19 health recommendations for patients, caregivers and the public. A case study of the COVID-19 recommendation map

Cited by 9 publications

References 18 publications

Plain Language vs Standard Format for Youth Understanding of COVID-19 Recommendations

Plain Language vs Standard Format for Youth Understanding of COVID-19 Recommendations

Knowledge mobilization activities to support decision-making by youth, parents, and adults using a systematic and living map of evidence and recommendations on COVID-19: protocol for three randomized controlled trials and qualitative user-experience studies

Knowledge mobilization activities to support decision-making by youth, parents, and adults using a systematic and living map of evidence and recommendations on COVID-19: protocol for three randomized controlled trials and qualitative user-experience studies

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