https://library.icmglt.org/files/original/758272d7b718c02db6020a72502392f6.jpg ab4d505a15d7f7649445c2f05c0cbb74 https://library.icmglt.org/files/original/f398042045d63e362972f7463d90e196.pdf 20f4612e9ba0fee05c7fe30a412a6371 Electronic Resource View Source <a href="https://doi.org/10.1111/hex.70152">https://doi.org/10.1111/hex.70152</a> Document Type Journal article Author(s) Lisa D. Hawke, Wuraola Dada-Phillips, Hajar Seiyad, Josh Orson, Lianne Goldsmith, Susan Conway, Adam Jordan, Natasha Y. Sheikhan, Melissa Hiebert, Sean Kidd, Kerry Kuluski Volume Vol. 28 Issue No. 1 Publisher John Wiley & Sons Ltd Journal Name Health Expectations Publication Date 2025 ISBN 13697625 Region Canada Language English Access Open Access Abstract Introduction People with lived experience of mental health and/or substance use conditions and their families (PWLE) are increasingly engaged in research, yet rigorous guidelines for engagement are lacking. This study aims to co-design best practice guidelines to support the authentic, meaningful engagement of PWLE in mental health and/or substance use health research. Methods A multi-panel modified Delphi study was conducted with 61 expert panelists (35 PWLE and family members, 26 researchers/research support staff from across Canada). Participants rated 56 recommendations for importance and clarity. Consensus was defined as ≥ 70% of participants rating items at 6 or 7 on a 7-point Likert scale (‘very important’ or ‘essential’). Qualitative feedback was analysed using content analysis to identify new items and reviewed for improvements in item clarity. After each round, items not meeting the established threshold of importance were removed. Items with low clarity scores were reworded. A PWLE advisory panel was actively involved throughout the study's design, implementation, interpretation, and reporting, ensuring that the perspectives of people with lived experience were integrated throughout the research process. Results Three Delphi Rounds were conducted. In Round 1, importance ratings ranged from 51.7% to 96.7% of participants ranking the items above the established threshold (average 80.1%), with clarity ratings ranging from 39.3% to 86.9% (average 70.7%) and an average importance coefficient of variation (CV) of 0.16. Four items were deleted, two new items were added and fifty-five items were revised. In Round 2, 60 (98.4%) participants responded. Importance ratings ranged from 57.6% to 96.7% (average 80.2%; average CV = 0.20). Clarity ratings ranged from 50.9% to 93.2% (average 77.9%). Five items were deleted and eleven revised. In Round 3, 60 (98.4%) participants provided importance ratings ranging from 66.7% to 98.3% (average 80.8%; average CV = 0.20), and clarity ratings ranging from 63.3% to 94.9% (average 81.1%). Three items were deleted and nine were revised. Forty-four final best practices are proposed. Conclusion These co-developed best practice guidelines offer recommendations for meaningful PWLE engagement in mental health and/or substance use health research. By following these guidelines, research teams can ensure that PWLE contributions are genuinely valued and effectively integrated, ultimately enhancing the quality and impact of the research and fostering authentic collaboration. Patient and public involvement People with lived experience were engaged throughout the project as key team members, from a patient-oriented research perspective. They are also co-authors on this manuscript. Cataloger Haley Lesemann Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Best Practices Guidelines for the Engagement of People With Lived Experience and Family Members in Mental Health and Substance Use Health Research: A Modified Delphi Consensus Study Subject The topic of the resource Mental health--Research--Canada--Citizen participation Family Health Research Mental Health Mental Illness Psychiatric Disorders Substance Use