Development of Guiding Principles and Practices for People with Lived and Living Experience in Community Based Organizations.
In the summer of 2023, the PSHA’s Collective Impact Network (CIN) identified the need to have a comprehensive document that serves as a tool and a guide for community-based organizations (CBOs) in BC to meaningfully engage people with lived and living experiences (PWLLE). Recognizing the dynamic and evolving nature of issues including HIV, hepatitis C, and harm reduction, the CIN adopted a unique approach to conduct a literature review.
The process was tailored to address the issues CBOs often face when navigating academic research. Typically, peer-reviewed research, while rich in theory, tends to focus narrowly on the subject. This often creates a disconnect between the knowledge from the research and the practical needs of CBOs. Furthermore, academic studies can be obscured by dense jargon and are frequently locked behind paywalls, restricting access to non-academic institutions. Meanwhile, the sheer volume of available literature, coupled with the presence of contradictory findings between studies, can also be daunting for those outside of academia. This is particularly problematic in rapidly changing and complex public health issues, like BC’s toxic drug crisis with ongoing transmissions of HIV, hepatitis C, and other STBBIs, where timely and contextually relevant research is crucial. Furthermore, the academic literature often lacks actionable guidance for implementation in community settings. While acknowledging the limitations of academic literature, it is important to recognize the rigor, depth, and comprehensive knowledge base that academic literature brings, which serves as an evidence-based foundation for the development of this document.
To bridge this gap, the CIN leaned into the strengths of grey literature, that are often produced by community advocacy and research groups. Grey literature includes white papers, reports summarizing key discussions, and evaluations of various initiatives. They offer critical insights and recommendations that are directly relevant to community needs and practices. However, the lack of a rigorous peer review process in grey literature raises questions about its accuracy and bias, as these publications may reflect the subjective viewpoints of their advocacy efforts. Despite its practical utility, it remains under-utilized due to its limited reach and recognition outside the immediate community context, which can affect its impact on the development of policies and practices.
Addressing another critical aspect, the traditional literature review process often involves reviewers with theoretical and methodological expertise while they may lack an in-depth experiential understanding of the subject matter. For a nuanced and emerging issue, engaging reviewers with deep, practical experience in the field ensures a more accurate interpretation of findings and identification of practice and implementation gaps. Meanwhile, these reviewers may also create a risk of bias and a tendency to focus narrowly, potentially skewing conclusions. Despite that, we believe it is important to have their engagement and interpretation of research in this context in formulating recommendations policies, and emerging practices.
With these considerations, the CIN adopted a strength-based approach, integrating peer-reviewed literature, grey literature, and a group of reviewers with both living and working experience in the field. The review strategy was solidified in consultation with experts in peer support and literature review. After a comprehensive screening process, over 60 articles were selected, including peer-reviewed articles, white papers, briefs, case studies, needs assessments, and community reports. The reviewers (CIN members) then engaged in reviewing this literature, providing reflections and insights into an annotated bibliography, which is currently being used as a foundation for evidence while crafting the guiding principles and practices document.
This blog post does not include the engagement process of an advisory group of PWLLE, which will be described separately in a subsequent blog. The full guiding principles and practices document is anticipated to be released in 2024, marking a significant contribution to the field.
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This post was prepared for PAN’s Research and Evaluation Treehouse by:
Janak Bajgai, Evaluation Specialist, [email protected]