Engaging Diverse Community Partners with Lived Experience using Human-Centered Design Principles to Develop Tailored Alcohol Interventions and Assessments
1 - (SYM 7) Engaging People with Lived Experience in the Development of Assessment Tools for Alcohol Use Disorder to Facilitate Testing Precision Medicine Hypotheses
Research Assistant Professor; Center on Alcohol, Substance use, And Addictions University of New Mexico Albuquerque, New Mexico, United States
Abstract Body Precision medicine, which is an approach that aims to match treatments to an individual’s unique profile, has been advanced as a potential solution to the problem of modest alcohol use disorder treatment (AUD) efficacy. The success of precision medicine lies in the ability to first identify the mechanisms that cause and maintain alcohol use for a given person and then choose the treatment that is most likely to address such mechanisms. The identification of such mechanisms requires comprehensive and psychometrically sound assessment tools that are acceptable among people with heavy alcohol use. This talk will describe the author’s ongoing program of research that aims to develop and validate a measure of the myriad mechanisms that cause and maintain AUD as described by the Etiologic, Theory-based, Ontogenetic, Hierarchical (ETOH) Framework of AUD with the goal of supporting precision medicine research and clinical applications. An innovative component of this measure development work has been the inclusion of five community partners with lived experience of alcohol and substance use throughout the process. Although community engagement is common in psychological research, and especially treatment research, it is not common in measure development and validation. This is problematic given people with lived experience, or “experts by experience”, are known to strengthen engagement in treatment and research, inform best practices, and guide the assessment of meaningful behavioral change indicators. Active involvement also has positive outcomes for people with lived experience, such as feeling heard and empowered, increasing trust in researchers, and strengthening connections with the community. Thus, in addition to describing the author’s ongoing program of research, this talk will also offer practical ideas for how to engage people with lived experience in measure development. The talk will conclude with a discussion of practical challenges and “lessons learned” in these efforts as well as a call to action to include people with lived experience of psychological symptoms or disorders in measure development.
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