“I’m not a graduate or doctor, yet we are all together:” Articulating a partnership model for community-engaged research

“I’m not a graduate or doctor, yet we are all together:” Articulating a partnership model for community-engaged research | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article “I’m not a graduate or doctor, yet we are all together:” Articulating a partnership model for community-engaged research Jenna Draanen, David L. Perlmutter, Jazmin Higuera Banos, Brenda Goh, and 10 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4804447/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Research With Expert Advisors on Drug Use (READU) is a community-engaged research collaborative of people with lived and living experience, clinicians, and academic researchers. We sought to evaluate the challenges and rewards of the partnership model. Methods Using the Peer Engagement Process Evaluation framework, the READU team collaborated on generating a list of focus group topics. All (n = 8) active team members participated in a focus group. Thematic analysis was used to identify key ideas. Results Five main themes were identified. “Collaborative Research Model” relates to the importance of a shared set of values, power dynamics, and the importance of centering community in research. “Group Dynamics” describes occasionally getting side-tracked in the work, as well as closeness among team members. “Individual Growth and Skill Development” concerns personal and intellectual development, as well as the benefits and opportunities for bi-directional training. “Institutional Structure”, encompasses the logistics of a hybrid working model and compensation issues. “Moving Forward and Future Work” involves the process of ending a research project in a positive way and envisioning future opportunities. Conclusion READU’s partnership model is generally positive and mutually beneficial for all team members. All partners feel a sense of satisfaction and closeness, and that the relevance and impact of research is enhanced. Although some challenges have been identified, particularly related to compensation and the physical workplace, these are not intractable. The evaluation of this partnership should motivate researchers considering partnership with community-based researchers, and highlight practical considerations. substance use community-engaged research research collaborative peer research Background People who use drugs (PWUD) are increasingly engaged in developing health programs and policy 1 2 and in research that informs programming and policy. 3-5 Excluding PWUD from research on and about them has ethical and scientific ramifications, leaving community members feeling disrespected, stigmatized, and exploited, 6 sometimes leading to de-stabilization and further marginalization. 7 Moreover, research conducted without input from PWUD may not be relevant to their interests and diminish trust in academic institutions. 3 Community-engaged research (CEnR), a framework for the inclusion of community members, enhances rigor and relevance of research, as well as timeliness, accessibility, and actionability of results. 8 While research questions and designs are typically generated from the top down, CEnR can involve community members from the beginning as equal partners. 9 Community partnerships are collaborative, valuing unique strengths and responsibilities of community, and frames community as a facet of identity. 9 Roche and colleagues define three practice models for PWUD: (1) advisory roles without much decision-making power; (2) being hired as staff to perform discrete, pre-determined tasks such as data collection; (3) participation in shaping the research question, design, dissemination, and potentially sharing ownership of the data. 10 Prior research collaboratives with PWUD have shown that partnership enriches the process for all parties and enhances the quality of the research. 11-13 Inclusion of PWUD on a research team, however, does not guarantee authentic or meaningful interaction. Unexamined power dynamics and a failure to meaningfully involve PWUD in study planning breed disappointment and feelings of exclusion. 3 . 14 This underscores the need to identify engagement strategies that are authentic and mutually beneficial. Existing literature focuses on the ethical issues and engagement models for PWUD employed as “peers” in service delivery settings, 1 15 and employment of members of other marginalized communities as peer research assistants or associates. 14 16 Less is known about how to form research partnerships that are respectful, equitable, and responsive to the interests of PWUD and which CEnR models are most effective. In this article, we describe the formation of Research with Expert Advisors on Drug Use (READU), an active CEnR partnership of individuals with lived and living experience of substance use, academic researchers, and practitioners. We address the following questions in the context of the group’s contribution to several research studies: What are the benefits and challenges of this research partnership for READU members? How do READU members want this partnership to evolve? Background Formation of READU Two participatory research projects were created to respond to local evidence needs regarding overdose response within first response systems (e.g., emergency medical services, firefighters). These projects were launched in partnership with community organizers, local public health agencies, harm reduction service providers, academic researchers, and clinicians seeking to engage PWUD and inform the development of an opioid overdose prevention program. The two qualitative pilot projects were designed to have ongoing involvement of community members with lived and living experience of substance use as paid team members. Recruitment for READU occurred between September-October 2021. First, the community researcher position description was drafted outlining, in lay language, both studies and qualifications for the position including: 1) the desire to meet the needs of PWUD; 2) experience working on a team; 3) comfort with reading, writing, technology, and sharing thoughts in a group setting. It stated that no research experience was required, and researchers would receive training. The description specified the range of hours a community researcher could expect to participate each week, the hourly pay, the pay schedule, the expected duration of the position, and all the questions that research staff would ask in an interview. The position description was intended to convey an accessible and flexible environment where fit would be mutually evaluated after 3 months. Five community researchers joined five academically-affiliated researchers/staff in November 2021 to form READU. When fit was mutually assessed after three months, two team members left the team: one due to time constraints and another due to difficulty upholding team agreements. Bi-directional training throughout the partnership included academically-affiliated researchers sharing knowledge about qualitative methods, institutional and community-driven research ethics, sampling, and interviewing skills, and community researchers sharing knowledge about the context surrounding local overdose response. The team met weekly for bi-directional training, team building, study design, preparation for data collection, analysis, and presentation of findings. Community researchers participated in all phases of research and ultimately presented findings in conferences, manuscripts, 17 and community-designed knowledge products (e.g., infographics, zines). More details on the partnership model can be found in Table 1, and the team agreements can be found in Table 2. After the pilot projects’ data collection and analyses were complete, the present study sought to examine the READU partnership benefits, challenges, and hopes for future evolution with the eight remaining team members. Methods Conceptual Framework and Data Collection The Peer Engagement Process Evaluation Framework 18 was used to identify relevant constructs, including: compensation-related issues, creating a supportive working environment, power and identity negotiations in a new work setting, capacity building, and shared goals for the future. READU team members discussed these and produced a list of discussion topics. One team member formatted these topics into focus group questions, which were subsequently reviewed and revised by the entire team. A 120-minute focus group was conducted with all (n = 8) active READU team members. The sample included four community researchers, three academic researchers, and one graduate research assistant. The focus group was conducted in a hybrid- video conference and in-person format. It was facilitated by a graduate student who had previously worked with READU. It was recorded and transcribed verbatim using a professional transcription service. Focus group participants were invited to share thoughts privately with the facilitator by email/phone/text, though none did. Data Analysis Analysis utilized a thematic analysis approach. 19 Two undergraduate-level student coders who worked with READU reviewed the transcript and created initial impressions for codes. One READU supervisor and the two coders then engaged in a workshop with the whole READU team to collaboratively develop a codebook using the notes and through discussion of the transcripts. Two student coders used the final codebook to independently code all transcripts, with any inconsistencies being resolved by the READU supervisor. The student coders reviewed the completed codes and associated data, subsequently organizing them into candidate themes and sub-themes. Themes were referenced against the larger dataset for coherence, formally defined, and named. Results Theme 1: Collaborative Research Model The READU team reflected on three main elements of their collaborative research model, illustrated in subthemes below, including: ( 1 ) teamwork and a shared sense of values; ( 2 ) leadership, power structure, and hierarchy; and ( 3 ) community focus, interaction, and engagement. Illustrative quotes are captured in Table 3 . Teamwork, experience, and a shared sense of values. When describing their teamwork and a shared sense of values, participants discussed collaboration and what it meant to each of them in their personal and collective identities to be part of the CEnR team. Participants expressed appreciation for being part of a team that felt more collaborative, collegial, and mission-driven than other projects they had participated in. They liked being part of a team with shared goals of policy impact and reducing stigma, specifically elaborating on the meaning and importance they felt as members of a team working on campus conducting research on harm reduction. Participants discussed creating their mission statement together and articulated shared movement toward a collective goal that had the potential to make change in the community. Participants expressed gratitude for their team’s shared commitment to dismantling power structures (further elaborated on in the “group dynamics” theme below), which they described as part of their collective identity. Participants were appreciative of the space created within the team to conduct particularly meaningful work based on common values and goals. Several participants referenced the ethics and core beliefs uniting the team, giving them a shared sense of purpose. Leadership, power structure, hierarchy . This subtheme related to a shared decision-making process where people with different backgrounds, professions, and experiences could work together. The leadership model was described using words like “flexible,” where there was not an imposed way of doing things and everyone’s opinion was valued. Personal and professional identities came up and participants described both comfort and discomfort with this process. Ultimately, participants spoke about this as part of learning how to interact with each other and work together in an environment with less barriers. Community focus, interaction, and engagement. Participants were positive about their research involvement and emphasized the value of meaningful involvement of people with lived experience in every stage. They felt that this was an authentic way to conduct research, describing the importance of providing equitable opportunities for all voices to be heard, and noting how this can lead to practical changes in policy and intervention strategies in community. Although the participants generally viewed READU as a successful example of engagement and appreciated how the team connected people across a variety of professional, research, and community roles, they expressed a desire to include more people with lived experience. Theme 2: Group Dynamics Within the over-arching theme of group dynamics and team functionality, subthemes of getting side-tracked and a sense of closeness emerged. The duality of getting side-tracked. Participants discussed how sometimes during team meetings, discussions would lead to tangents which felt like a lack of focus. Some participants described how the discussion's flexibility and permissive aspect may lead to digressions, but helped them get to know and learn from one another better than highly-structured meetings. On the other hand, one participant expressed frustrations with the tendency to be side-tracked due to prior experience working in more structured, task-based settings. Sense of closeness . Participants described a personal connection with the people they work with, liking other team members, caring for each other, and enjoying time together, which they felt was beneficial to the group dynamic and created genuine relationships within the team. Theme 3: Individual Growth and Skill Development Participants discussed personal growth and development from READU participation. Subthemes related to intellectual and personal growth as well as opportunities for bi-directional learning and other training. Intellectual and personal growth. Participants shared a variety of ways in which they had grown individually and as a team. Participants explained learning new things about research methods, substance use policy, and clinical interventions. They also gave examples about how they had grown personally (e.g., decreased social anxiety) and professionally (e.g., exposure to a different setting and new type of innovative research). Many participants appreciated the flexibility and openness of the working structure (e.g., having a variety of roles, responsibilities, and participation options that could be aligned with one’s skills and desires) which facilitated team growth. Training and opportunities for bi-directional learning. The initial weeks of READU were devoted to providing broad, didactic training around conducting research, with a focus on qualitative methods. Some community researchers noted that including high-level concepts (e.g., “What is research?”, “What are research ethics?”) before methods was useful. No community researchers had prior exposure to research methodology, and they expressed that the training had adequately prepared them. Community researchers appreciated the opportunity to apply concepts from the training via interactive exercises, including mock interviews to practice data collection and creating a codebook together. The emphasis on discussion and taking time to evaluate the “why” of research practices was seen as an important element of rigorous training. Participants without lived experience expressed a desire to increase bi-directionality, in line with the original intent, where community researchers could also offer training on relevant topics (e.g., challenges with probation, permanent supportive housing structures, drug market fluctuations, etc.). Theme 4: Institutional Structure Participants discussed the logistics of a hybrid working model and compensation issues, with these subthemes making up an overarching institutional structure theme. Hybrid model. Participants noted several benefits and challenges to participation. The flexibility to work remotely increased accessibility and convenience while reducing anxiety about missing work due to extenuating circumstances. However, community researchers noted challenges using technologies required for remote participation and sometimes lacking access to the right equipment. In addition to the hourly payments for their work, community researchers received a weekly stipend meant to help with transportation, technology access, and/or food expenses. Those in need were also initially provided with remote work. Some team members found it difficult to keep the technology in good working condition, and some felt that remote data collection with two interviewers was challenging, particularly navigating between an interview guide and the video conference on a single screen. In-person meetings were held in a conference room on the university campus. For most team members, this provided a mix of benefits and challenges. Team members enjoyed the building’s amenities, namely new technology that made hybrid collaboration easier, as well as access to free refreshments. However, an institutional work setting was a strain for some. Community researchers, some of whom could not officially employed by the university, but rather were affiliated through partnership, needed to be met downstairs and escorted upstairs to the aforementioned amenities by team members with a keycard, with keycard access restricted due to departmental policies. Community researchers felt frustrated about their limited access. Both community researchers and researchers from the university worried about the risk of unwanted encounters with campus security, and alternatives were tried, including meeting on the first floor where no keycard was required. Unfortunately, this was challenging for some members because it was less private, with fewer amenities. A suggestion for future work included holding in-person activities somewhere “that is low-key, not necessarily in an institution of some kind,” but this would mean losing the benefits that came with the institutional setting. After weighing the risks and benefits, the group decided to remain in the high-barrier space. Getting paid for time. Community researchers were paid either weekly in cash for those without bank accounts and/or via check for those who were able to be established as contractors or employees with the university. Another challenge discussed was that for some team members who were trying to reduce or eliminate substance use, the cash payment was occasionally challenging. One community researcher noted the risk associated with “having a decently large amount of cash all at once right before the weekend,” and participants discussed potential solutions, like payments earlier in the week or an intentionally deferred payment, both of which were subsequently implemented individually when requested. Despite these concerns, all participants agreed that compensating people with lived and living experience for their expertise and knowledge was a shared value. Because compensation was a way to recognize community researchers as equal partners on the projects, participants felt that continuing and sustainable funding streams were critical. Theme 5: Moving Forward and Future Work Discussions about sustainability, next steps, and future work elicited two distinct subthemes: ending in a positive way and future directions. Ending in a positive way. Participants reflected on ending the projects in a positive way, finding ways to stay involved in research, policy development, and communicating research findings as part of their community responsibility. While there was overarching uncertainty about next steps for the research, most had a shared the belief that their work would “speak for itself” and would ultimately lead to future opportunities. The participants observed that academic institutions could lower barriers for community engagement and community-driven research and hoped that their research would not only impact local overdose response but also change the way community research is done. They noted structural agreements that would ensure future READU work would grow out of the group’s shared values (see Table 1 ) and hoped the same could be true for other teams. Future directions. Participants expressed interest in future research on overdose prevention and harm reduction sites, as well as other topics they were passionate about. They highlighted the need to structure community work equitably, ensuring everyone's voices are heard and data should inform policy changes. Finally, all participants hoped to champion involving more people with lived experience in substance use research. Discussion We conducted a qualitative study, using focus group methodology to understand the benefits, challenges, and desired evolution of a research partnership with academic and community researchers focused on substance use. Thematic areas that emerged from the focus group included reflections on the collaborative research model, group dynamics and team functionality, experiences of personal growth and development, institutional structure, and future work. The model of collaboration built by the READU team started as a partially contractual model, 20 but it eventually evolved into a co-created model, where professional researchers and community members partner together at all stages of the scientific inquiry process, co-designing research questions driven by community needs, co-learning and building local capacity, and co-creating knowledge that has a transformative impact in communities. 21–29 There were many articulated benefits and positive elements of the collaboration model. Notably, READU’s model and structure elicited a strong sense of “togetherness” with shared values, teamwork, and closeness described by all. Like other CEnR studies, READU members valued regular meetings and the opportunity to learn from each other in a safe and supportive environment, 30–32 emphasizing that these interactions strengthened teamwork and enhanced success. 33 Not many published CEnR projects describe efforts taken to promote partnership development between professional researchers and community researchers. 34 Those that do, have described their structured team-based co-learning activities as intensive sharing of experiences and stories with listening, knowledge acquisition, and relationship building as pillars of this work; this resembles an experiential learning style, “reflection-action cycle of learning and application,” 32 34–38 similar to READU’s bidirectional training model. Participants strongly identified with the collective but also felt like they had room and support for their own personal growth and development. Like the results from this study, PWUD elsewhere have benefited from research engagement, including increased self-confidence through mentored capacity building in a highly collaborative working environment. 15 Participants appreciated flexibility in how individual members treated each other and how the team adapted to circumstances. Participants described several challenges. First, the group often became side-tracked, which was especially challenging for those with prior experience working in “high productivity” settings. Others brought up discomfort with wearing both personal and professional “hats” in the same space, which has also been described by others practicing CEnR. 39 Logistical challenges arose for those who occasionally participated remotely, and these barriers persisted even with attempts to mitigate them. Imperfect circumstances with both the in-person meeting space and compensation model led to challenges for community researchers. These types of logistical challenges are unfortunately common in CEnR and can increase occupational burnout, compassion fatigue, job cynicism, and high turnover. 40 While the CEnR literature commonly cites occupational hazards, psychological stressors with data collection, and the feeling of tokenization of community researchers 39 especially when they are not given meaningful work and provided space to give input on substantive research issues, these challenges were surprisingly absent from our findings. This underscores the importance of creating a variety of different options through which to contribute to the generation and synthesis of knowledge, as the READU model did, in contrast to other CEnR projects that "hand out" tasks or asks for feedback on already completed work. While specific changes to the model were not suggested, participants shared thoughts about sustainability, next steps, and future work. They hoped future work would be driven by the scientific interests and social engagement of all team members. The team had no guaranteed funding for future work when this study was conducted; however, the team has since secured additional funding and participated in several new projects driven by their diverse interests. Projects have been decided on through a group consensus model, and the team has developed a system for evaluating new research opportunities and creating contracts to ensure mutual understanding before embarking on new research or advisory projects. Refer to Table 4 for more details on criteria used to evaluate project opportunities. Limitations This study was limited by a relatively small sample size, single focus group design, and social desirability bias. Two team members had left the team prior to data collection and were not able to participate in the focus group, so it is likely that their perspectives differed from those who did participate. Negative or contradictory opinions may have been especially difficult for group members to share, although confidential and private opportunities for submitting thoughts outside of the focus egroup were provided. Due to the highly contextual nature of the situation and CEnR model, results from this focus group may not be generalizable. Nevertheless, in the spirit of continually improving CEnR, we offer our experiences and partnership model for others to learn from, critique, and build on. Strengths The present article makes several contributions to the existing literature. Much of the research concerning PWUD’s involvement in CEnR has been generated from projects well into their development or after their completion. We offer the perspectives of a research collaborative at a critical, early stage of relationship-building, to understand what has worked well and what should improve. We build on existing knowledge about engaging PWUD as partners through our practical experience. And crucially, we identify priorities as we co-create a research agenda driven equitably by the interests and contributions of all team members. Conclusion Partnering with people with lived and living experience has the potential to enhance the quality of research. We offer our experiences as a research collaborative to demonstrate the challenges and rewards of CEnR, and highlight practical considerations for researchers of working with PWUD. READU members valued the opportunity to develop closeness as a team, develop personally and professionally, and to learn from one another. Adjusting to the pace of research and staying on track, as well as practical considerations related to compensation and creating an accessible workplace, were identified as challenges. As READU has matured, it has evolved to a collaborative that is increasingly co-created, with members working together to generate new research ideas and pursuing opportunities for collaboration. Abbreviations READU Research with Expert Advisors on Drug Use PWUD People Who Use Drugs CEnR Community Engaged Research Declarations This study was approved by the University of Washington Institutional Review Board. All study participants underwent an informed consent process. All study activities were done in accordance with the Declaration of Helsinki. Funding: This study was supported by an Implementation Science Pilot Grant from the University of Washington and a Research Intramural Funding Program Grant from the University of Washington. Author Contribution J.V.D and D.L.P wrote the main manuscript text; J.V.D, D.L.P, B.G., C.W., G.W., N.H., R.R., R.P., T.F., S.T., supported data collection and J.H.B., J.VD. and C.W. conducted data analysis; J.V.D., C.E.F., T.O.W., T.F. were responsible for project conceptualization; J.V.D, D.L.P., J.H.B., B.G., C.W., G.W., N.H., R.R., R.P., C.E.F., A.P., S.T., T.O.W., and T.F. reviewed and edited the manuscript. 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The ethics of public and service user involvement in health research: The need for participatory reflection on everyday ethical issues. Am J Bioeth. 2019;19(8):23–5. https://doi.org/10.1080/15265161.2019.1619869 . Coombe CM, Schulz AJ, Guluma L, Allen AJ, Gray C, Brakefield-Caldwell W, Guzman JR, Lewis TC, Reyes AG, Rowe Z, Pappas LA, Israel BA. Enhancing capacity of community–academic partnerships to achieve health equity: results from the CBPR partnership academy. Health Promot Pract. 2020;21(4):552–63. https://doi.org/10.1177/1524839918818830 . Campbell E, Lassiter LE. From collaborative ethnography to collaborative pedagogy: Reflections on the other side of Middletown project and community–university research partnerships. Anthropol Educ Q. 2010;41(4):370–85. https://doi.org/10.1111/j.1548-1492.2010.01098.x . Carlton E, Whiting J, Bradford K, Dyk P, Vall A. Defining factors of successful university-based community initiatives: An ethnographic exploration of oneHealthy Marriage Project. Fam Relat. 2009;58:28. https://doi.org/10.1111/j.1741-3729.2008.00532.x . Jagosh J, Bush PL, Salsberg J, Macauly AC, Greenhalgh T, Wong G, Cargo M, Green LW, Herbert CP, Pluye P. A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects. BMC Public Health. 2015;15(1):1–11. https://doi.org/10.1186/s12889-015-1949-1 . Wright KN, Williams P, Wright S, Lieber E. Ties that bind: Creating and sustaining community-academic partnerships. Gateways. 2011;4:83–99. 10.5130/ijcre.v4i0.1784 . Molyneux C, Goudge J, Russell S, Chuma J. Conducting health-related social science research in low income settings: Ethical dilemmas faced in Kenya and South Africa. J Int Dev. 2009;21(2):309–26. 10.1002/jid.1548 . Fisher CB, True G, Alexander L, et al. Moral stress, moral practice, and ethical climate in community-based drug-use research: Views from the front line. AJOB Prim Res. 2013;4(3):27–38. https://doi.org/10.1080/21507716.2013.806969 . Tables Table 1 to 4 are available in the Supplementary Files section. Additional Declarations No competing interests reported. Supplementary Files Tables14.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4804447","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":334838673,"identity":"16000653-1564-4ab9-b52b-0bf2af53a29a","order_by":0,"name":"Jenna Draanen","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAtUlEQVRIiWNgGAWjYBACxgYgwQPE/GAuGylaJBuI1QIGIC0GB4jVwjwj+dmDt3vs5I1v5BgwfCg7TITDZqSZG855lmy4DaiFccY5YrT0HDCT5jnAzLjtRu4GZt42orQc/wbUUm+/eQZQy1+itLT3gGw5nLhBAqiFkUgtZZJzDhxPnnHm/YeDPefSCWsxbGbfJvHmQLVtf3ta4oMfZdZEaGlA4hwgrB4I5IlSNQpGwSgYBSMbAADsTTymrNHeeQAAAABJRU5ErkJggg==","orcid":"","institution":"University of Washington","correspondingAuthor":true,"prefix":"","firstName":"Jenna","middleName":"","lastName":"Draanen","suffix":""},{"id":334838674,"identity":"fec4fab0-15d0-4430-929c-3be458fa5149","order_by":1,"name":"David L. 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Washington","correspondingAuthor":false,"prefix":"","firstName":"Tessa","middleName":"","lastName":"Frohe","suffix":""}],"badges":[],"createdAt":"2024-07-26 00:08:23","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4804447/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4804447/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":100237178,"identity":"d940f70f-0a5c-4c4e-96c9-b361089abdb1","added_by":"auto","created_at":"2026-01-14 12:40:56","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":749961,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4804447/v1/734f53fd-18ff-4d83-a518-0c653db2ba05.pdf"},{"id":63467953,"identity":"b1a7c1fd-d8b7-4095-bf43-4069353ee50e","added_by":"auto","created_at":"2024-08-28 12:41:19","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":30918,"visible":true,"origin":"","legend":"","description":"","filename":"Tables14.docx","url":"https://assets-eu.researchsquare.com/files/rs-4804447/v1/a6a61d8db50e7e8c01867d92.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"“I’m not a graduate or doctor, yet we are all together:” Articulating a partnership model for community-engaged research","fulltext":[{"header":"Background","content":"\u003cp\u003ePeople who use drugs (PWUD) are increasingly engaged in developing health programs and policy\u003csup\u003e1 2\u003c/sup\u003e and in research that informs programming and policy.\u003csup\u003e3-5\u003c/sup\u003e Excluding PWUD from research on and about them has ethical and scientific ramifications, leaving community members feeling disrespected, stigmatized, and exploited,\u003csup\u003e6\u003c/sup\u003e sometimes leading to de-stabilization and further marginalization.\u003csup\u003e7\u003c/sup\u003e Moreover, research conducted without input from PWUD may not be relevant to their interests and diminish trust in academic institutions.\u003csup\u003e3\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003eCommunity-engaged research (CEnR), a framework for the inclusion of community members, enhances rigor and relevance of research, as well as timeliness, accessibility, and actionability of results.\u003csup\u003e8\u003c/sup\u003e While research questions and designs are typically generated from the top down, CEnR can involve community members from the beginning as equal partners.\u003csup\u003e9\u003c/sup\u003e Community partnerships are collaborative, valuing unique strengths and responsibilities of community, and frames community as a facet of identity.\u003csup\u003e9\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003eRoche and colleagues define three practice models for PWUD: (1) advisory roles without much decision-making power; (2) being hired as staff to perform discrete, pre-determined tasks such as data collection; (3) participation in shaping the research question, design, dissemination, and potentially sharing ownership of the data.\u003csup\u003e10\u003c/sup\u003e Prior research collaboratives with PWUD have shown that partnership enriches the process for all parties and enhances the quality of the research.\u003csup\u003e11-13\u003c/sup\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eInclusion of PWUD on a research team, however, does not guarantee authentic or meaningful interaction. Unexamined power dynamics and a failure to meaningfully involve PWUD in study planning breed disappointment and feelings of exclusion.\u003csup\u003e3\u003c/sup\u003e.\u003csup\u003e14\u003c/sup\u003e This underscores the need to identify engagement strategies that are authentic and mutually beneficial.\u003c/p\u003e\n\u003cp\u003eExisting literature focuses on the ethical issues and engagement models for PWUD employed as \u0026ldquo;peers\u0026rdquo; in service delivery settings,\u003csup\u003e1 15\u003c/sup\u003e and employment of members of other marginalized communities as peer research assistants or associates.\u003csup\u003e14 16\u003c/sup\u003e Less is known about how to form research partnerships that are respectful, equitable, and responsive to the interests of PWUD and which CEnR models are most effective. In this article, we describe the formation of Research with Expert Advisors on Drug Use (READU), an active CEnR partnership of individuals with lived and living experience of substance use, academic researchers, and practitioners. We address the following questions in the context of the group\u0026rsquo;s contribution to several research studies:\u0026nbsp;\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eWhat are the benefits and challenges of this research partnership for READU members?\u003c/li\u003e\n \u003cli\u003eHow do READU members want this partnership to evolve?\u0026nbsp;\u003c/li\u003e\n\u003c/ul\u003e\u003cbr\u003e\n\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFormation of READU\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eTwo participatory research projects were created to respond to local evidence needs regarding overdose response within first response systems (e.g., emergency medical services, firefighters). These projects were launched in partnership with community organizers, local public health agencies, harm reduction service providers, academic researchers, and clinicians seeking to engage PWUD and inform the development of an opioid overdose prevention program. The two qualitative pilot projects were designed to have ongoing involvement of community members with lived and living experience of substance use as paid team members.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRecruitment for READU occurred between September-October 2021. First, the community researcher position description was drafted outlining, in lay language, both studies and qualifications for the position including: 1) the desire to meet the needs of PWUD; 2) experience working on a team; 3) comfort with reading, writing, technology, and sharing thoughts in a group setting. It stated that no research experience was required, and researchers would receive training. The description specified the range of hours a community researcher could expect to participate each week, the hourly pay, the pay schedule, the expected duration of the position, and all the questions that research staff would ask in an interview. The position description was intended to convey an accessible and flexible environment where fit would be mutually evaluated after 3 months.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFive community researchers joined five academically-affiliated researchers/staff in November 2021 to form READU. When fit was mutually assessed after three months, two team members left the team: one due to time constraints and another due to difficulty upholding team agreements. Bi-directional training throughout the partnership included academically-affiliated researchers sharing knowledge about qualitative methods, institutional and community-driven research ethics, sampling, and interviewing skills, and community researchers sharing knowledge about the context surrounding local overdose response. The team met weekly for bi-directional training, team building, study design, preparation for data collection, analysis, and presentation of findings. Community researchers participated in all phases of research and ultimately presented findings in conferences, manuscripts,\u003csup\u003e17\u003c/sup\u003e and community-designed knowledge products (e.g., infographics, zines). More details on the partnership model can be found in Table 1, and the team agreements can be found in Table 2. After the pilot projects\u0026rsquo; data collection and analyses were complete, the present study sought to examine the READU partnership benefits, challenges, and hopes for future evolution with the eight remaining team members.\u0026nbsp;\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eConceptual Framework and Data Collection\u003c/h2\u003e \u003cp\u003eThe Peer Engagement Process Evaluation Framework\u003csup\u003e18\u003c/sup\u003e was used to identify relevant constructs, including: compensation-related issues, creating a supportive working environment, power and identity negotiations in a new work setting, capacity building, and shared goals for the future. READU team members discussed these and produced a list of discussion topics. One team member formatted these topics into focus group questions, which were subsequently reviewed and revised by the entire team. A 120-minute focus group was conducted with all (n\u0026thinsp;=\u0026thinsp;8) active READU team members. The sample included four community researchers, three academic researchers, and one graduate research assistant. The focus group was conducted in a hybrid- video conference and in-person format. It was facilitated by a graduate student who had previously worked with READU. It was recorded and transcribed verbatim using a professional transcription service. Focus group participants were invited to share thoughts privately with the facilitator by email/phone/text, though none did.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eAnalysis utilized a thematic analysis approach.\u003csup\u003e19\u003c/sup\u003e Two undergraduate-level student coders who worked with READU reviewed the transcript and created initial impressions for codes. One READU supervisor and the two coders then engaged in a workshop with the whole READU team to collaboratively develop a codebook using the notes and through discussion of the transcripts. Two student coders used the final codebook to independently code all transcripts, with any inconsistencies being resolved by the READU supervisor. The student coders reviewed the completed codes and associated data, subsequently organizing them into candidate themes and sub-themes. Themes were referenced against the larger dataset for coherence, formally defined, and named.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eTheme 1: Collaborative Research Model\u003c/h2\u003e \u003cp\u003eThe READU team reflected on three main elements of their collaborative research model, illustrated in subthemes below, including: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) teamwork and a shared sense of values; (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) leadership, power structure, and hierarchy; and (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) community focus, interaction, and engagement. Illustrative quotes are captured in Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e\u003cb\u003eTeamwork, experience, and a shared sense of values.\u003c/b\u003e When describing their teamwork and a shared sense of values, participants discussed collaboration and what it meant to each of them in their personal and collective identities to be part of the CEnR team. Participants expressed appreciation for being part of a team that felt more collaborative, collegial, and mission-driven than other projects they had participated in. They liked being part of a team with shared goals of policy impact and reducing stigma, specifically elaborating on the meaning and importance they felt as members of a team working on campus conducting research on harm reduction. Participants discussed creating their mission statement together and articulated shared movement toward a collective goal that had the potential to make change in the community. Participants expressed gratitude for their team\u0026rsquo;s shared commitment to dismantling power structures (further elaborated on in the \u0026ldquo;group dynamics\u0026rdquo; theme below), which they described as part of their collective identity. Participants were appreciative of the space created within the team to conduct particularly meaningful work based on common values and goals. Several participants referenced the ethics and core beliefs uniting the team, giving them a shared sense of purpose.\u003c/p\u003e \u003cp\u003e\u003cb\u003eLeadership, power structure, hierarchy\u003c/b\u003e. This subtheme related to a shared decision-making process where people with different backgrounds, professions, and experiences could work together. The leadership model was described using words like \u0026ldquo;flexible,\u0026rdquo; where there was not an imposed way of doing things and everyone\u0026rsquo;s opinion was valued. Personal and professional identities came up and participants described both comfort and discomfort with this process. Ultimately, participants spoke about this as part of learning how to interact with each other and work together in an environment with less barriers.\u003c/p\u003e \u003cp\u003e \u003cb\u003eCommunity focus, interaction, and engagement.\u003c/b\u003e Participants were positive about their research involvement and emphasized the value of meaningful involvement of people with lived experience in every stage. They felt that this was an authentic way to conduct research, describing the importance of providing equitable opportunities for all voices to be heard, and noting how this can lead to practical changes in policy and intervention strategies in community. Although the participants generally viewed READU as a successful example of engagement and appreciated how the team connected people across a variety of professional, research, and community roles, they expressed a desire to include more people with lived experience.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eTheme 2: Group Dynamics\u003c/h2\u003e \u003cp\u003eWithin the over-arching theme of group dynamics and team functionality, subthemes of getting side-tracked and a sense of closeness emerged.\u003c/p\u003e \u003cp\u003e\u003cb\u003eThe duality of getting side-tracked.\u003c/b\u003e Participants discussed how sometimes during team meetings, discussions would lead to tangents which felt like a lack of focus. Some participants described how the discussion's flexibility and permissive aspect may lead to digressions, but helped them get to know and learn from one another better than highly-structured meetings. On the other hand, one participant expressed frustrations with the tendency to be side-tracked due to prior experience working in more structured, task-based settings.\u003c/p\u003e \u003cp\u003e\u003cb\u003eSense of closeness\u003c/b\u003e. Participants described a personal connection with the people they work with, liking other team members, caring for each other, and enjoying time together, which they felt was beneficial to the group dynamic and created genuine relationships within the team.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: Individual Growth and Skill Development\u003c/h2\u003e \u003cp\u003e Participants discussed personal growth and development from READU participation. Subthemes related to intellectual and personal growth as well as opportunities for bi-directional learning and other training.\u003c/p\u003e \u003cp\u003e\u003cb\u003eIntellectual and personal growth.\u003c/b\u003e Participants shared a variety of ways in which they had grown individually and as a team. Participants explained learning new things about research methods, substance use policy, and clinical interventions. They also gave examples about how they had grown personally (e.g., decreased social anxiety) and professionally (e.g., exposure to a different setting and new type of innovative research). Many participants appreciated the flexibility and openness of the working structure (e.g., having a variety of roles, responsibilities, and participation options that could be aligned with one\u0026rsquo;s skills and desires) which facilitated team growth.\u003c/p\u003e \u003cp\u003e\u003cb\u003eTraining and opportunities for bi-directional learning.\u003c/b\u003e The initial weeks of READU were devoted to providing broad, didactic training around conducting research, with a focus on qualitative methods. Some community researchers noted that including high-level concepts (e.g., \u0026ldquo;What is research?\u0026rdquo;, \u0026ldquo;What are research ethics?\u0026rdquo;) before methods was useful. No community researchers had prior exposure to research methodology, and they expressed that the training had adequately prepared them. Community researchers appreciated the opportunity to apply concepts from the training via interactive exercises, including mock interviews to practice data collection and creating a codebook together. The emphasis on discussion and taking time to evaluate the \u0026ldquo;why\u0026rdquo; of research practices was seen as an important element of rigorous training. Participants without lived experience expressed a desire to increase bi-directionality, in line with the original intent, where community researchers could also offer training on relevant topics (e.g., challenges with probation, permanent supportive housing structures, drug market fluctuations, etc.).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eTheme 4: Institutional Structure\u003c/h2\u003e \u003cp\u003eParticipants discussed the logistics of a hybrid working model and compensation issues, with these subthemes making up an overarching institutional structure theme.\u003c/p\u003e \u003cp\u003e\u003cb\u003eHybrid model.\u003c/b\u003e Participants noted several benefits and challenges to participation. The flexibility to work remotely increased accessibility and convenience while reducing anxiety about missing work due to extenuating circumstances. However, community researchers noted challenges using technologies required for remote participation and sometimes lacking access to the right equipment. In addition to the hourly payments for their work, community researchers received a weekly stipend meant to help with transportation, technology access, and/or food expenses. Those in need were also initially provided with remote work. Some team members found it difficult to keep the technology in good working condition, and some felt that remote data collection with two interviewers was challenging, particularly navigating between an interview guide and the video conference on a single screen.\u003c/p\u003e \u003cp\u003eIn-person meetings were held in a conference room on the university campus. For most team members, this provided a mix of benefits and challenges. Team members enjoyed the building\u0026rsquo;s amenities, namely new technology that made hybrid collaboration easier, as well as access to free refreshments. However, an institutional work setting was a strain for some. Community researchers, some of whom could not officially employed by the university, but rather were affiliated through partnership, needed to be met downstairs and escorted upstairs to the aforementioned amenities by team members with a keycard, with keycard access restricted due to departmental policies. Community researchers felt frustrated about their limited access. Both community researchers and researchers from the university worried about the risk of unwanted encounters with campus security, and alternatives were tried, including meeting on the first floor where no keycard was required. Unfortunately, this was challenging for some members because it was less private, with fewer amenities. A suggestion for future work included holding in-person activities somewhere \u0026ldquo;that is low-key, not necessarily in an institution of some kind,\u0026rdquo; but this would mean losing the benefits that came with the institutional setting. After weighing the risks and benefits, the group decided to remain in the high-barrier space.\u003c/p\u003e \u003cp\u003e\u003cb\u003eGetting paid for time.\u003c/b\u003e Community researchers were paid either weekly in cash for those without bank accounts and/or via check for those who were able to be established as contractors or employees with the university. Another challenge discussed was that for some team members who were trying to reduce or eliminate substance use, the cash payment was occasionally challenging. One community researcher noted the risk associated with \u0026ldquo;having a decently large amount of cash all at once right before the weekend,\u0026rdquo; and participants discussed potential solutions, like payments earlier in the week or an intentionally deferred payment, both of which were subsequently implemented individually when requested. Despite these concerns, all participants agreed that compensating people with lived and living experience for their expertise and knowledge was a shared value. Because compensation was a way to recognize community researchers as equal partners on the projects, participants felt that continuing and sustainable funding streams were critical.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eTheme 5: Moving Forward and Future Work\u003c/h2\u003e \u003cp\u003eDiscussions about sustainability, next steps, and future work elicited two distinct subthemes: ending in a positive way and future directions.\u003c/p\u003e \u003cp\u003e \u003cb\u003eEnding in a positive way.\u003c/b\u003e Participants reflected on ending the projects in a positive way, finding ways to stay involved in research, policy development, and communicating research findings as part of their community responsibility. While there was overarching uncertainty about next steps for the research, most had a shared the belief that their work would \u0026ldquo;speak for itself\u0026rdquo; and would ultimately lead to future opportunities. The participants observed that academic institutions could lower barriers for community engagement and community-driven research and hoped that their research would not only impact local overdose response but also change the way community research is done. They noted structural agreements that would ensure future READU work would grow out of the group\u0026rsquo;s shared values (see Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e) and hoped the same could be true for other teams.\u003c/p\u003e \u003cp\u003e \u003cb\u003eFuture directions.\u003c/b\u003e Participants expressed interest in future research on overdose prevention and harm reduction sites, as well as other topics they were passionate about. They highlighted the need to structure community work equitably, ensuring everyone's voices are heard and data should inform policy changes. Finally, all participants hoped to champion involving more people with lived experience in substance use research.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eWe conducted a qualitative study, using focus group methodology to understand the benefits, challenges, and desired evolution of a research partnership with academic and community researchers focused on substance use. Thematic areas that emerged from the focus group included reflections on the collaborative research model, group dynamics and team functionality, experiences of personal growth and development, institutional structure, and future work. The model of collaboration built by the READU team started as a partially \u003cem\u003econtractual\u003c/em\u003e model,\u003csup\u003e20\u003c/sup\u003e but it eventually evolved into a \u003cem\u003eco-created\u003c/em\u003e model, where professional researchers and community members partner together at all stages of the scientific inquiry process, co-designing research questions driven by community needs, co-learning and building local capacity, and co-creating knowledge that has a transformative impact in communities.\u003csup\u003e21\u0026ndash;29\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThere were many articulated benefits and positive elements of the collaboration model. Notably, READU\u0026rsquo;s model and structure elicited a strong sense of \u0026ldquo;togetherness\u0026rdquo; with shared values, teamwork, and closeness described by all. Like other CEnR studies, READU members valued regular meetings and the opportunity to learn from each other in a safe and supportive environment,\u003csup\u003e30\u0026ndash;32\u003c/sup\u003e emphasizing that these interactions strengthened teamwork and enhanced success.\u003csup\u003e33\u003c/sup\u003e Not many published CEnR projects describe efforts taken to promote partnership development between professional researchers and community researchers.\u003csup\u003e34\u003c/sup\u003e Those that do, have described their structured team-based co-learning activities as intensive sharing of experiences and stories with listening, knowledge acquisition, and relationship building as pillars of this work; this resembles an experiential learning style, \u0026ldquo;reflection-action cycle of learning and application,\u0026rdquo;\u003csup\u003e32 34\u0026ndash;38\u003c/sup\u003e similar to READU\u0026rsquo;s bidirectional training model.\u003c/p\u003e \u003cp\u003e Participants strongly identified with the collective but also felt like they had room and support for their own personal growth and development. Like the results from this study, PWUD elsewhere have benefited from research engagement, including increased self-confidence through mentored capacity building in a highly collaborative working environment.\u003csup\u003e15\u003c/sup\u003e Participants appreciated flexibility in how individual members treated each other and how the team adapted to circumstances.\u003c/p\u003e \u003cp\u003eParticipants described several challenges. First, the group often became side-tracked, which was especially challenging for those with prior experience working in \u0026ldquo;high productivity\u0026rdquo; settings. Others brought up discomfort with wearing both personal and professional \u0026ldquo;hats\u0026rdquo; in the same space, which has also been described by others practicing CEnR.\u003csup\u003e39\u003c/sup\u003e Logistical challenges arose for those who occasionally participated remotely, and these barriers persisted even with attempts to mitigate them. Imperfect circumstances with both the in-person meeting space and compensation model led to challenges for community researchers. These types of logistical challenges are unfortunately common in CEnR and can increase occupational burnout, compassion fatigue, job cynicism, and high turnover.\u003csup\u003e40\u003c/sup\u003e While the CEnR literature commonly cites occupational hazards, psychological stressors with data collection, and the feeling of tokenization of community researchers\u003csup\u003e39\u003c/sup\u003e especially when they are not given meaningful work and provided space to give input on substantive research issues, these challenges were surprisingly absent from our findings. This underscores the importance of creating a variety of different options through which to contribute to the generation and synthesis of knowledge, as the READU model did, in contrast to other CEnR projects that \"hand out\" tasks or asks for feedback on already completed work.\u003c/p\u003e \u003cp\u003eWhile specific changes to the model were not suggested, participants shared thoughts about sustainability, next steps, and future work. They hoped future work would be driven by the scientific interests and social engagement of all team members. The team had no guaranteed funding for future work when this study was conducted; however, the team has since secured additional funding and participated in several new projects driven by their diverse interests. Projects have been decided on through a group consensus model, and the team has developed a system for evaluating new research opportunities and creating contracts to ensure mutual understanding before embarking on new research or advisory projects. Refer to Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e for more details on criteria used to evaluate project opportunities.\u003c/p\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eThis study was limited by a relatively small sample size, single focus group design, and social desirability bias. Two team members had left the team prior to data collection and were not able to participate in the focus group, so it is likely that their perspectives differed from those who did participate. Negative or contradictory opinions may have been especially difficult for group members to share, although confidential and private opportunities for submitting thoughts outside of the focus egroup were provided. Due to the highly contextual nature of the situation and CEnR model, results from this focus group may not be generalizable. Nevertheless, in the spirit of continually improving CEnR, we offer our experiences and partnership model for others to learn from, critique, and build on.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eStrengths\u003c/h2\u003e \u003cp\u003eThe present article makes several contributions to the existing literature. Much of the research concerning PWUD\u0026rsquo;s involvement in CEnR has been generated from projects well into their development or after their completion. We offer the perspectives of a research collaborative at a critical, early stage of relationship-building, to understand what has worked well and what should improve. We build on existing knowledge about engaging PWUD as partners through our practical experience. And crucially, we identify priorities as we co-create a research agenda driven equitably by the interests and contributions of all team members.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003ePartnering with people with lived and living experience has the potential to enhance the quality of research. We offer our experiences as a research collaborative to demonstrate the challenges and rewards of CEnR, and highlight practical considerations for researchers of working with PWUD. READU members valued the opportunity to develop closeness as a team, develop personally and professionally, and to learn from one another. Adjusting to the pace of research and staying on track, as well as practical considerations related to compensation and creating an accessible workplace, were identified as challenges. As READU has matured, it has evolved to a collaborative that is increasingly co-created, with members working together to generate new research ideas and pursuing opportunities for collaboration.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eREADU\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eResearch with Expert Advisors on Drug Use\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003ePWUD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003ePeople Who Use Drugs\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCEnR\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eCommunity Engaged Research\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003eThis study was approved by the University of Washington Institutional Review Board. All study participants underwent an informed consent process. All study activities were done in accordance with the Declaration of Helsinki.\u003c/p\u003e\u003ch2\u003eFunding:\u003c/h2\u003e \u003cp\u003eThis study was supported by an Implementation Science Pilot Grant from the University of Washington and a Research Intramural Funding Program Grant from the University of Washington.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eJ.V.D and D.L.P wrote the main manuscript text; J.V.D, D.L.P, B.G., C.W., G.W., N.H., R.R., R.P., T.F., S.T., supported data collection and J.H.B., J.VD. and C.W. conducted data analysis; J.V.D., C.E.F., T.O.W., T.F. were responsible for project conceptualization; J.V.D, D.L.P., J.H.B., B.G., C.W., G.W., N.H., R.R., R.P., C.E.F., A.P., S.T., T.O.W., and T.F. reviewed and edited the manuscript.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eA summary of our thematic analysis can be found in Table 3.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eMarshall Z, Dechman MK, Minichiello A, Alcock L, Harris GE. 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AJOB Prim Res. 2013;4(3):27\u0026ndash;38. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1080/21507716.2013.806969\u003c/span\u003e\u003cspan address=\"10.1080/21507716.2013.806969\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTable 1 to 4 are available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"substance use, community-engaged research, research collaborative, peer research","lastPublishedDoi":"10.21203/rs.3.rs-4804447/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4804447/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eResearch With Expert Advisors on Drug Use (READU) is a community-engaged research collaborative of people with lived and living experience, clinicians, and academic researchers. We sought to evaluate the challenges and rewards of the partnership model.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eUsing the Peer Engagement Process Evaluation framework, the READU team collaborated on generating a list of focus group topics. All (n\u0026thinsp;=\u0026thinsp;8) active team members participated in a focus group. Thematic analysis was used to identify key ideas.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eFive main themes were identified. \u0026ldquo;Collaborative Research Model\u0026rdquo; relates to the importance of a shared set of values, power dynamics, and the importance of centering community in research. \u0026ldquo;Group Dynamics\u0026rdquo; describes occasionally getting side-tracked in the work, as well as closeness among team members. \u0026ldquo;Individual Growth and Skill Development\u0026rdquo; concerns personal and intellectual development, as well as the benefits and opportunities for bi-directional training. \u0026ldquo;Institutional Structure\u0026rdquo;, encompasses the logistics of a hybrid working model and compensation issues. \u0026ldquo;Moving Forward and Future Work\u0026rdquo; involves the process of ending a research project in a positive way and envisioning future opportunities.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eREADU\u0026rsquo;s partnership model is generally positive and mutually beneficial for all team members. All partners feel a sense of satisfaction and closeness, and that the relevance and impact of research is enhanced. Although some challenges have been identified, particularly related to compensation and the physical workplace, these are not intractable. The evaluation of this partnership should motivate researchers considering partnership with community-based researchers, and highlight practical considerations.\u003c/p\u003e","manuscriptTitle":"“I’m not a graduate or doctor, yet we are all together:” Articulating a partnership model for community-engaged research","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-08-28 12:41:15","doi":"10.21203/rs.3.rs-4804447/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"4d0a07f3-64c3-4ac4-abc8-4c2b1379339e","owner":[],"postedDate":"August 28th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-01-14T12:39:50+00:00","versionOfRecord":[],"versionCreatedAt":"2024-08-28 12:41:15","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4804447","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4804447","identity":"rs-4804447","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}