How Involving People with Lived Expertise Strengthens Research

The Value of Lived Expertise in Addressing Global Research Challenges     

Researchers are being asked to respond to some of the toughest challenges our world has seen, requiring diverse perspectives to increase transparency, accessibility, and equity and to foster growth and discovery. There is a growing recognition that research is stronger when people who have directly experienced the phenomena being studied are involved—not just as study participants, but as members of the research team. These experts—often referred to as people with lived experience or lived expertise—bring an on-the-ground lens to complex issues that is pivotal when it comes to making research relevant and actionable. 

Integrating Lived Expertise into Equity-Centered Research

The equity-centered research framework developed by RTI International’s Transformative Research Unit for Equity (TRUE) explains why people with lived expertise should play a central role in all stages of the research process. Early in an investigation, experts with lived experience can partner with researchers to identify areas of study that are aligned with community interests and needs, while producing findings that can inform policy and practice. In addition, people with lived expertise can make vital contributions in the design of study procedures, including creating survey and interview questions that are clear, respectful, and sensitive to power dynamics and the feelings of stigma or trauma that participating in research can evoke. Furthermore, the input of people who have intimate knowledge of the experience being studied can transform and enliven analytical processes, leading to innovative insights and helping shed light on paradoxical or unexpected findings. When studies reach the dissemination phase, having experts who can situate study results in the context of their (and their communities’) stories is an effective way to share knowledge with audiences outside of academia.

Tapping into lived experience expertise has multiple benefits, but many researchers have not been taught best practices for engaging people with lived expertise, and they struggle with knowing how to meaningfully include them. Below, we highlight several projects in which RTI researchers took concrete steps to substantially involve people with lived expertise in ways that led to mutually fulfilling collaborations and improved research. 

How to Build a Research Team with Lived Expertise: The A Crecer Study

A Crecer (“to grow”) is a multiyear, community-based prospective cohort study funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development focused on the health and well-being of adolescents and young adults living in Salinas, California. Principal Investigator Alexandra Minnis prioritized hiring a field research team composed of early career bilingual and bicultural first-generation college students, most of whom come from the Salinas area or from similar agriculture-based communities in central California.

The cultural sensitivity of the field research team—along with their strong commitment to conducting research to inform Latinx adolescent and young adult health—has contributed to the ability to obtain parent permission for minor-age teens to participate in the study and establish rapport with study participants and their guardians. This rapport was essential for meeting enrollment goals, achieving high retention, and facilitating the successful reengagement of participants and their parents after a 3-year pause in funding. In addition, these individuals have offered insights across all phases of the study—from refining the research approach and questionnaires to being instrumental in guiding the analysis of quantitative and qualitative findings. In response to interest from study participants, the field research team established a group of Young Adult Advocate Advisors to aid with study implementation. The group has also brought new perspectives to the interpretation of study results and guided the development of dissemination materials to be shared with community members in ways that will be engaging to young people themselves. 

For most of the field research team, A Crecer was their first post-college job and their first job in research. By being encouraged to incorporate their lived expertise in day-to-day study operations and having their expertise recognized and valued by senior researchers, the experience led to new professional development opportunities. One team member recently began a master’s program and gave a class presentation on A Crecer, highlighting her role as a research analyst. She also brought study consent forms as models for a seminar. Although she has started graduate school, she remains in touch with her field research colleagues and has actively shared what she is learning in the program, both to help inform work on the study and to provide insight into the benefits of graduate school.

How to Prioritize Professional Development and Lived Expertise: The GODDESS Study

When designing the Gathering Online for Dialogue and Discussion to Enhance Social Support (GODDESS) study, Principal Investigator Felicia Browne wanted to create an advisory council of young Black women from Durham and Wake counties in North Carolina to play a key role in the project work. Born and raised in Durham County, Dr. Browne had strong insights as to how to reach young women who might be interested in joining the council. By giving presentations at a local historically Black university, attending community events, distributing flyers in local businesses and nonprofits, and engaging existing networks, she and her team recruited members of what would become the Black Advisory Goddesses—or BAG, a name chosen by the BAG members themselves. 

Recognizing how valuable input from these experts would be for her research, Dr. Browne invested in making their participation in GODDESS a rewarding experience for them as well. The recruitment materials and interest form explicitly stated that BAG members would have access to networking and other professional development opportunities. When they signed up to participate, the experts were asked questions that helped the research team understand their priorities and needs, including, “What are you most interested in as a member of the GODDESS Young Women Advisory Council?” and “What goals do you have that you would like help achieving as part of this group?” Dr. Browne and her team used their responses to plan activities that helped members meet their goals. Through in-person meetings at RTI to foster connections, direct engagement with the Principal Investigator and study Co-Investigators, planned meetings with other project community boards, and opportunities to “own” aspects of the project as task leads, the project team listened to the requests of the BAG members and aimed to provide an impactful experience for each person involved in the group.

How to Learn from Lived Expertise Advisors: Working with Survivors of Sex Trafficking

In their research focusing on people who have survived sex trafficking, Rebecca Pfeffer and Kelle Barrick are intentional about sharing power with community-based organizations and people with lived expertise. The study design for the Estimating Sex Trafficking in Sacramento County project was co-created with Community Against Sexual Harm, a local survivor-led nonprofit, and the Institute for Social Research at Sacramento State University. The project involved a Survivor Advisory Committee (SAC) that convened regularly and contributed to the design and implementation of the project. The SAC also wrote several “survivor action briefs,” including Survivors of Sex Trafficking, Their Children, and Opportunities for Intervention: Key Findings and Recommendations, Survivor Experiences With Law Enforcement: Key Findings and Recommendations, andImproving Survivors’ Experiences With Services Through Peer Advocacy: Key Findings and Recommendations.

In the Human Trafficking Policy and Research Analyses Project, funded by the Administration for Children and Families (ACF), people with lived expertise co-facilitated listening sessions and workshops. Multiple challenges arose in compensating these experts, some of whom could not receive direct deposits because they did not have bank accounts, were unfamiliar with the processes and tax implications of invoicing as a consultant, or experienced significant distress when notified of a payment delay or error due to histories of economic abuse. In addition to working with RTI’s finance department to create flexible payment options and clear communications for the experts, Dr. Pfeffer and her team submitted a 10-page memo to the ACF Office on Trafficking in Persons documenting the key lessons learned. The memo also contained economic empowerment strategies developed for engaging people with lived expertise of surviving human trafficking as research experts and participants.

Incorporating Lived Expertise in Future Research

As research continues to evolve, opening the door for unique perspective sharing is helpful to strengthen research and address some of our most pressing social issues. Whether exploring an innovative method for addressing HIV locally among young Black women or understanding the scope and nature of sex trafficking in Sacramento County, California, the inclusion of lived expertise in research enhances the quality of the project and maximizes the impact of the results. Hearing from individuals with lived expertise can also shed light on future areas of study, further facilitating the research continuum. By engaging in these critical collaborations and understanding diverse viewpoints and experiences, researchers can make significant progress to improve people’s health, safety, and well-being.

Learn how RTI is advancing equity in research and contributing to better health outcomes for all.