In 2024, the article “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” was published. This article presents a summary.
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
To cite the article:
Hawke LD, Dada-Phillips W, Seiyad H, Orson J, Goldsmith L, Conway S, Jordan A, Sheikhan NY, Hiebert M, Kidd S, Kuluski K. 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. Health Expect. 2025 Feb;28(1):e70152. doi: 10.1111/hex.70152. PMID: 39832210.
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.
Context
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.
- 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.