Applying nationwide public engagement in guideline prioritization and development of recommendations

Article type
Authors
Brozek J1, Kapil N1, Khoshroo K1, Lotfi T1, Motilall A1, Nieuwlaat R1, Pardo Pardo J2, Raja M1, Santesso N1, Schünemann H3, Solo K1, Valavil Punnapuzha V1, Wiercioch W1, Yuan C1
1McMaster University, Hamilton, Ontario, Canada
2University of Ottawa, Ottawa, Ontario, Canada
3McMaster University, Hamilton, Ontario, Canada; Humanitas University, Milan, Italy
Abstract
Background: Given the wide-reaching impact of post–COVID-19 condition (PCC), health guidelines addressing PCC must ensure relevance for the target audience. For the Canadian Guidelines for Post COVID-19 Condition (CAN-PCC), intended to be applicable across all Canadian healthcare settings, we sought to obtain public engagement through mass open-comment periods (MOPs).

Objective: Describe the process, results, and lessons learned from use of MOPs in a large-scale guideline project

Methods: For the steps of guideline topic prioritization, question prioritization, and feedback on draft good practice statements (GPSs), we held 7- to 14-day long MOPs. We designed online surveys asking respondents to (1) agree or disagree using a 7-point Likert scale that 6 proposed guideline topics were a priority, (2) suggest guideline questions, (3) indicate concerns about proposed guideline questions, and (4) indicate concerns about draft GPSs. The surveys were administered in English and French. We advertised the public comment periods through the CAN-PCC project website, a project contact list, and our research center social media accounts.

Results: We received 1037, 674, and 484 responses for the 3 MOPs, respectively. Approximately 40% of the respondents in each MOP were people with lived PCC experience, followed by members of the public (~30%) and healthcare providers (~20%). For topic prioritization, the agreement rating means ranged from 5.1 (SD 2.2) to 5.7 (SD 1.8) for the 6 topics, with strong disagreement constituting 5% to 14% of responses. Respondents submitted 3861 guideline question suggestions. For question prioritization, "major concerns" constituted 12% to 19% of responses across the 6 topics. For feedback on draft GPSs, "major concerns" constituted 8% to 21% of responses across 9 GPSs. For all MOPs, we reviewed comments for "disagree" or "major concerns" responses, leading to improvements including plain language use, clarity in terminology and definitions, and development of knowledge mobilization products (eg, glossary, explainer video).

Conclusions: MOPs can offer broad engagement for guideline development steps, but they require significant time investment for administration and analysis. MOPs are a priority for future research to evaluate usefulness and impact, including comparative studies versus targeted feedback approaches or versus AI-assisted technologies (eg, ChatGPT, Google Gemini).