Researchers with Lived Experience: Closing the Research-to-Practice Gap in Substance Use Systems of Care

By Camille C. Cioffi, PhD., University of Oregon, Oregon Research Institute, & Influents Innovations, Patrick F. Hibbard, PhD., Chestnut Health Systems Lighthouse Institute, Angela Hagaman, DrPh, East Tennessee State University, Martha Tillson, PhD., University of Kentucky, Noel Vest, PhD., Boston University School of Public Health

Multiracial group of business people having a meeting

A pressing challenge to address the current overdose crisis is to facilitate the translation of evidence-based programs and practices into widespread use by communities (Blanco, et al., 2020; Cerda, et al., 2023; Krausz, et al., 2024; Sprague, et al, 2020). Centering community perspectives through skilled implementation support is critical to accomplish this goal. However, one potentially underacknowledged group that may facilitate translation of research into practice are researchers with lived (and living) experience with substance use disorders (RLE). Often, people think of people with substance use disorders and researchers as distinct, non-overlapping groups of people (Banks, et al., 2023; Miller, et al., 2024). RLE, however, exist and our team is a living example. The purpose of our work to help the field understand how we can use both our research and lived expertise to help translate research into practice. Our ultimate goal is to use what we have learned to help build trust and shared knowledge between communities and researchers and bridge gaps to improve program outcomes.

In our paper we describe how RLE can contribute to the successful implementation of evidence-based interventions by building strong community partnerships, engaging in effective knowledge translation, providing community-defined evaluation best-practices , and aiding in dissemination and sustainability efforts (Gartner, et al., 2018; Maiter, et al., 2008). Readers may be interested in how to purposefully include researchers with lived experience but wonder, what does this look like in practice?

Prior to Implementation

Integration of RLE during the pre-implementation stage can support the development of community building.

• Identifying community partners: RLE may be aware of the diversity in community partners and can offer ideas for collaboration.
• Building and maintaining partnerships: RLE can gain trust through shared lived experience when building and maintaining new partnerships.
• Identifying community-congruent evidence-based programs and practices: RLE may have an understanding of community acceptance around common practices to support translation of evidence-based practices that may be in line with common practices or help researchers understand factors making implementation more challenging.
• Sharing scientific knowledge using community-defined terminology: Shared language can facilitate shared understanding. RLE might be quick to understand jargon or terminology common to community partners. They may also be able to more clearly articulate academic jargon into terms more relatable or appropriate for community partners.

Preparing for Implementation

Intentional integration of RLE may support implementation preparation efforts to more quickly move research into practice.

• Development and adaptation evidence-based interventions: RLE can aid in engaging the community to define shared values and identifying practices most aligned with those values to support program development and adaptation. Each community is different and RLE with intersectional experiences and an awareness of distinct community considerations can support meaningful adaptation to improve the uptake of evidence-based programs and practices.

During and Following Implementation

• Quality Improvement: RLE could support the identification of implementation strategies to improve program reach and the implementation of core components.
• Tailoring communications for multiple audiences: RLE may be able to support tailoring information about program effectiveness and outcomes to be more salient to the community context. For example, highlighting common clinical goals in treatment settings or recovery community organizations. They may also be able to support organizations when experiencing implementation challenges by matching community concerns with evidence-informed solutions.

Considerations for Collaboration
We suggest that the intentional inclusion of RLE in research can accelerate the pace of science, improve the quality and outcomes of implementation science research, and make it more responsive to community needs. Strategies for collaborating with RLE to ensure meaningful participation in research and reduce stigma related to substance use disorders include creating a supportive climate where RLE feel safe and valued in disclosing relevant personal experiences. This involves:

• Avoiding stigmatizing language
• Acknowledging the value of RLE's positionality
• Recognizing the limitations that a team may have when lived and living experience is not included
• Positioning people in recovery or active addiction as experts
• Establishing a climate where existing colleagues would feel safe and valued in disclosing relevant personal experiences
• Understanding not every RLE will be a good match for every community partnership (RLE are not all the same and each hold their own intersectional identities and perspectives)
• Centering leadership from disproportionately impacted communities and to support the process of knowledge translation within their respective communities
• Acknowledging that not RLE will want to disclose their experience because of stigma. This means that addressing the stigma that exists within research institutions with the input of external RLE may be a first step for decreasing the fear of disclosure.

These strategies can help ensure meaningful participation, reduce stigma related to substance use disorders, and ultimately improve implementation process and outcomes specific to evidence-based programs and practices related to SUD.

References

Banks, D. E., Brown, K., & Saraiya, T. C. (2023). “Culturally responsive” substance use treatment: contemporary definitions and approaches for minoritized racial/ethnic groups. Current Addiction Reports, 10(3), 422-431.

Blanco C, Wiley TRA, Lloyd JJ, Lopez MF, Volkow ND. America's opioid crisis: the need for an integrated public health approach. Transl Psychiatry. 2020 May 28;10(1):167. doi: 10.1038/s41398-020-0847-1. PMID: 32522999; PMCID: PMC7286889.

Cerdá, M., Krawczyk, N., & Keyes, K. (2023). The future of the United States overdose crisis: challenges and opportunities. The Milbank Quarterly, 101(Suppl 1), 478.

Cioffi, C. C., Hibbard, P. F., Hagaman, A., Tillson, M., & Vest, N. (2023). Perspectives of researchers with lived experience in implementation science research: Opportunities to close the research-to-practice gap in substance use systems of care. Implementation research and practice, 4, 26334895231180635. https://doi.org/10.1177/26334895231180635

Gartner, K., Elliott, K., Smith, M., Pearson, H., Hunt, G., & Martin, R. E. (2018). “People in regular society don’t think you can be a good mother and have a substance use problem”: Participatory action research with women with substance use in pregnancy. Canadian Family Physician, 64(7), e309-e316.

Krausz, R. M., Westenberg, J. N., Tai, A. M., Fadakar, H., Seethapathy, V., Mathew, N., ... & Ignaszewski, M. (2024). A call for an evidence-based strategy against the overdose crisis. The Canadian Journal of Psychiatry, 69(1), 5-9.

Maiter, S., Simich, L., Jacobson, N., & Wise, J. (2008). Reciprocity: An ethic for community-based participatory action research. Action research, 6(3), 305-325.

Miller, E. A., DeVeaugh-Geiss, A. M., & Chilcoat, H. D. (2024). Opioid use disorder (OUD) and treatment for opioid problems among OUD symptom subtypes in individuals misusing opioids. Drug and Alcohol Dependence Reports, 10, 100220.

Sprague Martinez L, Rapkin BD, Young A, Freisthler B, Glasgow L, Hunt T, Salsberry PJ, Oga EA, Bennet-Fallin A, Plouck TJ, Drainoni ML, Freeman PR, Surratt H, Gulley J, Hamilton GA, Bowman P, Roeber CA, El-Bassel N, Battaglia T. Community engagement to implement evidence-based practices in the HEALing communities study. Drug Alcohol Depend. 2020 Dec 1;217:108326. doi: 10.1016/j.drugalcdep.2020.108326. Epub 2020 Oct 6. PMID: 33059200; PMCID: PMC7537729.