People with Lived Experience in Research
Write-up by IRIS team members: Sofia Quinn & Victoria Barreira
Involvement of people with lived experience in research is becoming more widely recognized and valued as an integral aspect of research studies and research-community collaborations. IRIS prioritizes inclusivity and diversity in research and embodies these values through our learning collaborative and recruitment process for new research team members. As a peer specialist that has transitioned into research on the IRIS team, it has been rewarding for me to refine my research skills, while also being able to contribute my knowledge about recovery and the community to both the IRIS team and our community partners. The IRIS team has been incredibly supportive in providing me with opportunities to learn new research skills, and with being open, inclusive, and welcoming to my thoughts and input.
Further exemplifying IRIS’s commitment to empowering inclusivity of lived experience in research was our recent IRIS Recovery Research Fellowship. One Fellow executed a research project on studying the equitable inclusion of peers as university-based research staff. The Fellows’ project highlights the various benefits of including peers in academic roles, as well as the multiple barriers that continue to hinder the inclusion of individuals with lived experience in research. The following articles delve into a few of these barriers, along with the benefits and strategies for effectively engaging more people with lived experience in research.
"Perspectives of Researchers With Lived Experience in Implementation Science Research: Opportunities to Close the Research-To-Practice Gap in Substance Use Systems of Care"
Article Authors: Camille C. Cioffi, Patrick F. Hibbard, Angela Hagaman, Martha Tillson, Noel Vest
This article was led by one of IRIS’s partners through the Consortium on Addiction Recovery Science (CoARs; https://www.recoveryanswers.org/coars/), the JEAP Initiative (https://www.jeapinitiative.org/). It discusses the barriers to community collaboration within research, highlights the benefits of researchers with lived experience (RLE) in substance use disorders (SUDs) for community-research partnerships, and presents strategies for effective collaboration when working with RLE. Community collaborations have been challenging in the past due to the community’s lack of trust in the intentions of researchers and difficulties in identifying a shared language for effective communication and understanding. However, RLE has played a crucial role in overcoming these barriers. Their combined knowledge of research methodologies and lived experience with SUDs has proven beneficial in community collaborations between researchers and community members. To best integrate RLE in research settings, the strategies recommended include creating inclusive and supportive research environments and recruiting students and colleagues with lived experience. Promoting inclusivity in incorporating individuals with lived experience into research may help advance implementation science and destigmatize lived experience in academia.
"Research Evidence and Implementation Gaps in the Engagement of People With Lived Experience in Mental Health and Substance Use Research: A Scoping Review"
Article Authors: Lisa D. Hawke, Natasha Y. Sheikhan, Sara Roberts, Shelby McKee
This article presents a scoping review of numerous articles highlighting research evidence and implementation gaps in the engagement of people with lived experience (defined as PWLE in this article) in mental health and substance use research. The engagement described goes beyond PWLE as research participants, instead focusing on roles such as research advisors and co-researchers. There were forty-nine literary articles chosen from an electronic system database and analyzed through a codebook thematic analysis, which is a practical method that involves organizing themes gathered from literature. Through their assessment of the literature, the authors of the article outline the current state of engagement of PWLE in research, while also addressing areas where further effort is needed for effective implementation of PWLE in the research field.
Existing literature indicates that engaging PWLE in mental health and substance use research creates stronger connections and collaborations between researchers and the community. Such collaborations increase the chance that implications of research outcomes will be implemented and sustained in practice and policy contexts. Despite some clear findings from the reviewed articles, evidence gaps remain that indicate the need for future research. These include better understanding of PWLE engagement in research, establishing resources for researchers to better develop practical methods in engaging PWLE in research, increasing the diversity of PWLE engagement in research teams and settings, and evaluating the impact that PWLE has on research. Regarding the implementation of PWLE within research roles, identified institutional gaps included lack of funding for such positions, lack of support for PWLE within research settings and lack of engagement of PWLE within everyday practices such as providing training, mentorship and leadership opportunities.
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. https://doi.org/10.1177/26334895231180635
Hawke, L. D., Sheikhan, N. Y., Roberts, S., & McKee, S. (2023). Research evidence and implementation gaps in the engagement of people with lived experience in mental health and substance use research: a scoping review. Research Involvement and Engagement, 9(1). https://doi.org/10.1186/s40900-023-00442-5