Centering Community Voices Through Lived Experience Panels
By Nikita Malcolm
In our work at CECA, we seek to engage a diverse range of expertise, including community members. At CECA, we define “community” as people who use or would like to use contraception, and those who help them get it, with a particular focus on people who experience barriers to receiving the care they want and have experienced mistreatment in past and present.
What are Lived Experience Panel (LEPs)?
LEPs are a central way that we engage community expertise in our work. LEPs are semi-structured discussions with community members intended to gather valuable, expert insights on a range of topics. For us, LEPs are a vital way to gather important and diverse insights from the real experts in contraceptive care – the people seeking that care.
We design, coordinate, and convene LEPs in close collaboration with various partner organizations, such as Advocates for Youth, Planned Parenthood Federation of America and SisterLove. LEP partner organizations are community-based or healthcare organizations operating at the national, state, or local level with a commitment to equity, meaningful community engagement, and/or strong community partnerships. Partner organizations provide input into the design and conduct of LEPs and help recruit individuals to participate.
Why does CECA convene LEPs?
LEPs are a way of infusing the voices of community members with lived experience as a critical source of expertise, alongside other sources of evidence like technical expertise and academic literature, all of which enable CECA to devise appropriate and workable solutions. We convene LEPs to:
Generate insightful, honest, and rich insights from community members on relevant topics, centered around their own knowledge, experiences, preferences, needs, and values, and those of the communities around them.
Create a forum for community members to grapple with existing research, discuss the extent to which the evidence reflects lived experiences, and shape future research, policy, and other forms of change.
Ensure specific project findings and recommendations are aligned with community needs and values.
How have CECA LEPs helped change research, policy, and practice?
Clinical Guidelines – by learning more about how patients experience sexual and reproductive health care and aligning federal clinical guidelines with this perspective.
Sterilization – by improving understanding of how patients and families interface with the federal sterilization policy and processes and ensuring that suggestions for improvement are aligned with their needs.
Workforce – by understanding how people accessing or seeking to access contraceptive care define what the workforce should look like, best practices, and expectations from the patient perspective.
Research – by helping to improve research about sexual and reproductive health care in relation to who needs it, where and how it is provided and received, and what difference access can make.