86 - “The School of Hard Knocks” -- Working with (and as) Lived Experience Experts

Abstract Information: In recent decades, Lived Experience Experts (LEEs) have been involved in research and evaluation of various health initiatives, SAMHSA-funded mental health programs, child welfare efforts (Coles & Murphy, 2023), and higher education/labor initiatives. Recently Long Covid patients revolutionized health research, defining and conceptualizing a new disease by acting as agents, not just subjects, of ongoing health research (McCorkell et al., 2021). Despite these achievements, the gap between scientists and the larger community generally seems to have grown, not decreased. Instant access to sharing information and disinformation on the internet has expedited this divide, as has the backlash of scientists’ dismissal of non-scientists. How can we, as evaluators, narrow these gaps?

Arguably, everyone is a LEE in some aspects of their lives. Virtually everyone has experienced a lack of respect or understanding at some point in their lives because of their status: as a student, a member of an underrepresented population, a junior employee, a patient, or another role. All of us can learn from this and use it to improve our work with lived experience experts in other areas; areas in which dismissal and disrespect are far more salient. For this session, the discussants will talk briefly about the challenges of conducting research and evaluation with LEEs -- based on their own experiences as professional evaluators and/or as LEEs themselves.

Carolyn Sullins will present her experiences as an empowerment evaluator, as a patient with a rare neurological condition, and the serendipitous overlap of the two roles. Steven Petritis will discuss his lived experience as a hard science graduate student, a laboratory teaching assistant, and a STEM education researcher and how these experiences were often at odds in the ever-changing landscape of higher education. Aubrey Comperatore will overview the importance of and challenges to including LEEs in the evaluation of government-funded programs.

Discussion questions will concern how researchers/evaluators could effectively narrow the science/community gap, including:
Think of times when your own Lived Experience Expertise was derided or dismissed. What was that like? How can that experience translate into better practice as an evaluator?
Does “The School of Hard Knocks” have valuable lessons for all of us?
How can we reframe “validity” and “rigor” to incorporate and value LEE contributions?
How can we work with LEEs when the mandates for the evaluation limit them?
Can we move beyond including our LEEs in small-scale evaluations, and work towards bridging the growing divide between LEEs and science?