JMIR Publications

ABSTRACT

Research projects that are conducted in collaboration with patients and caregivers are more rigorous, relevant, and impactful within the communities of focus. One mechanism for facilitating patient and caregiver engagement in research is through a Lived Experience Panel (LEP) – an intentionally assembled group of people with personal experience relevant to the research topic. LEPs can engage in any or all aspects of the research project, from study ideation to participant recruitment to dissemination and translation of findings. Fully realizing the potential of an LEP to inform the research process requires intentionality in LEP composition, as members should be aligned with the range of lived experience in the community of focus. Mechanisms to recruit patient or caregiver advisors for research may require researchers to reach beyond pre-existing relationships if they intend to achieve maximum variability. However, explicit processes for forming a maximally variable LEP are scarce. In the present guide, we outline an LEP formation process that includes laying the foundation for recruitment with academic and community partners; collaboratively developing promotional materials and an interest survey; using community-embedded promotional channels to share about the LEP opportunity; and selecting interviewees and LEP invitees using a process called maximum variance sampling. Outcomes of our LEP formation process include the relative productivity of each promotional channel, the specific timeline from LEP ideation to formation, the sociodemographic variability of our applicants, and real LEP members' feedback on the formation process. We conclude by highlighting what we perceive as keys to success, including collaboration with trusted community partners and a thoughtfully designed interest survey that enabled us to narrow a large applicant pool to a diverse set of invitees. We also describe challenges and lessons learned, including opportunities to better articulate LEP responsibilities during interviews and ways to navigate the tensions inherent in selecting members based on maximum variance. Researchers are encouraged to invest time and resources into building relationships with community partners, knowing that these relationships lay the groundwork for reaching diverse patients and caregivers to advise research.