Achieving meaningful participation of people who use drugs and their peer organizations in a strategic research partnership

Abstract

Background Peer-led programs with people who use drugs (PWUD) have been a key characteristic of the harm reduction in many countries, including their involvement in research. However, peer involvement in research is often limited to recruitment, consultation, and reporting back, rather than a genuine collaboration in the priority setting, design, and conduct of research. PWUD peer organizations face ongoing challenges to demonstrate the depth of their knowledge of current and emerging issues within drug-using networks and the value of their peer insights for effective research and policy. The identification of benefits, barriers, and enablers for meaningful participation of PWUD in research has often been limited to methodological rather than system level factors. Methods This paper draws on the experiences and findings of the What Works and Why (W3) Project, a 5-year collaborative study with peer organizations. The study drew on systems thinking methods to develop a framework to demonstrate the role of peer organizations within their community and policy systems. The study required peer staff and researchers to undertake the simultaneous role of drivers, participants, and analysts in the research. To identify the learnings in relation to meaningful participation of PWUD peer organizations in research, we drew together the insights and experiences of peer staff and researchers across the 5 years of the study Results The W3 Project provided insights into the nuances of community-engaged research practice and the ongoing benefits, barriers, and enablers to the meaningful participation of PWUD and their peer organizations. These included system-level barriers and enablers beyond individual research projects or methodology. The capacity of research and peer organizations to maintain meaningful peer participation in research can be restricted or enhanced by the systems in which they are embedded. Conclusions Recognizing peer organizations as active participants and drivers within community and policy systems can help clarify their unique and critical role in research. Achieving meaningful collaboration with PWUD peer organizations requires looking beyond good practice methods to the system-level factors with attention to the system-level benefits, barriers, and enablers.

Provision of peer support at the intersection of homelessness and problem substance use services: a systematic ‘state of the art’ review

“…It is of course essential to reward and avoid exploitation, however it is important to note that the circumstances of, and resources for, peer engagement vary significantly (e.g. [23]). In addition, the rationale for volunteering can be very strong, especially in relation to development of needed skills and experience with additional support structures, and the presence of social welfare restrictions regarding an individual transitioning back into paid employment (e.g .…”

“…For example, researchers in Australia have developed recommendations for the use of peer support within 'high-risk' environments, where personnel are routinely exposed to potentially traumatic events, such as emergency services and the military [20] and Canadian advisory groups have developed national guidelines on the inclusion of those with lived experience of homelessness services [21]. There is also strategic policy support for peer involvement, evident, for example, in the Scottish national drug and alcohol treatment strategy [22] and in Australia [23] and Canada [24].…”

A focused netnographic study exploring experiences associated with counterfeit and contaminated anabolic-androgenic steroids

“…In this sense, and in line with our previous research [23], forum members act as peers, providing harm reduction information to others in their community. Peers and their lived experiences are highly regarded in their communities and have been an important aspect of the harm reduction movement [63]; indeed, peers have been identified as a common source of information and help among those who use PIEDs such as AAS [64]. Online forums may provide a discreet, anonymous, and more readily accessible point of entry to peers and harm reduction information, and the lived experiences which can underpin this.…”

Research Recruitment: A Case Study on Women with Substance Use Disorder

“…Since studies on research recruitment of women with SUD were limited, the search was broadened to include research recruitment of people who use drugs (PWUD). Ten studies were relevant; seven in international settings (Boucher et al, 2017;Brown et al, 2019;Grové, 2019;MacVicar, Humphrey, & Forbes-McKay, 2018;Sirdifield, Owens, & Brooker, 2016;Thong, Ulph, Barrowclough, & Gregg, 2019;Thornton, Harris, Baker, Johnson, & Kay-Lambkin, 2016) and three in the United States (Ballard, Cooper, & Young, 2019;Batista et al, 2016;Ryan, Smeltzer, & Sharts-Hopko, 2019). The literature emphasized individual factors as prominent challenges regarding research recruitment of women with SUD and PWUD.…”

“…Experiential differences between researcher and participant, such as lack of familiarity with participants and cultural dissonance, has contributed to low participation rates in research for women with SUD (Batista et al, 2016). Investigator lack of familiarity with the target population has led to inappropriate solutions, decreased trust and credibility, and hindered the rigor of the study (Brown et al, 2019;Thong et al, 2019). One team of investigators further indicated that visibility of the research team with participants and the community engendered research participation.…”