Using Partner-Driven Maximum Variance Sampling to Form a Lived Experience Panel: Step-by-Step Tutorial

Area of Science:

• Patient and Community Engagement in Research
• Health Services Research
• Qualitative Research Methods

Background:

• Collaborative research with patients and caregivers increases rigor, relevance, and impact.
• Lived Experience Panels (LEPs) are groups of individuals with personal experience relevant to a research topic, facilitating patient and caregiver engagement.
• Effective LEPs require intentional composition to reflect the diversity of the community of focus.

Purpose of the Study:

• To outline a process for forming maximally variable lived experience panels (LEPs).
• To guide researchers in recruiting diverse patient and caregiver advisors for research projects.
• To share lessons learned and keys to success in LEP formation.

Main Methods:

• Establishing foundational partnerships with academic and community stakeholders.
• Collaboratively developing promotional materials and an interest survey for recruitment.
• Utilizing community-embedded channels for promotion and maximum variance sampling for selection.

Main Results:

• Detailed outcomes include promotional channel productivity, LEP formation timeline, applicant sociodemographic variability, and member feedback.
• A thoughtfully designed interest survey and collaboration with community partners were key to recruiting a diverse LEP.
• Challenges included articulating LEP responsibilities and navigating selection tensions inherent in maximum variance sampling.

Conclusions:

• Investing in relationships with trusted community partners is crucial for recruiting diverse patient and caregiver advisors.
• A systematic LEP formation process, emphasizing maximum variance sampling, can yield a diverse and representative panel.
• Successful LEP formation requires intentionality in recruitment, clear communication of roles, and strategic use of community partnerships.