Background: Many community-based HIV research studies incorporate principles of greater involvement and meaningful engagement of people living with HIV (GIPA/MEPA) by training people with HIV as peer researchers. Unfortunately, there are still some aspects of research (e.g., quantitative data analysis and interpretation) where many projects fall short in realizing GIPA/MEPA principles. To address these gaps, we developed an eight-week training course that aimed to build the capacity of peer researchers around the understanding and interpretation of quantitative data and incorporating lived experience to increase the impact of the knowledge transfer and exchange phase of a study.
Methods: Peer researchers (n = 8) participated from British Columbia, Alberta, and Ontario and lessons learned from the training were implemented throughout the dissemination of research findings from the People Living with HIV Stigma Index study. This paper presents the curriculum and main training components, course evaluation results, and challenges and lessons learned. The manuscript was created in collaboration with and includes the perspectives of both the peer researchers involved in the training, as well the course facilitators.
Results: Throughout the course, peer researchers' self-assessed knowledge and understanding of quantitative research and data storytelling improved and, through interactive activities and practice, they gained the confidence to deliver a full research presentation. This improved their understanding of research findings, which was beneficial for discussing results with community partners and study participants. The peer researchers also agreed that learning about integrating lived experience with quantitative data has helped them to make research findings more relatable and convey key messages in a more meaningful way.
Conclusions: Our training curriculum provides a template for research teams to build capacity in areas of research where peer researchers and community members are less often engaged. In doing so, we continue to uphold the principles of GIPA/MEPA and enhance the translation of research knowledge in communities most greatly affected.
Keywords: Community-based participatory research; Community-based research; HIV; Patient engagement.
Engaging patient groups or community members is commonplace in HIV research where people living with HIV are trained as peer researchers. There are still however some gaps where community members are less engaged, especially in quantitative data analysis. This presents a barrier preventing them from being meaningfully engaged in research about them. To build capacity in these areas, we designed an eight-week online course that taught peer researchers about quantitative data analysis and interpretation with a focus on concepts that would be important for talking about key messages from research findings. This was used to enhance the knowledge translation and dissemination initiatives for the People Living with HIV Stigma Index study—a survey tool containing quantitative measures examining stigma and related health factors. Peer researchers agreed that their knowledge and understanding of the key quantitative data concepts improved significantly throughout the course. This increased understanding helped them discuss quantitative data with community members and study participants, which was important to ensure that research findings reach the affected communities. Peer researchers also agreed that incorporating their new data analysis knowledge with existing lived experience helped them to make findings more relatable and understandable which is critical for translating knowledge to other researchers and policy makers. Overall, our training curriculum gave peer researchers the confidence to talk about quantitative data and improve their capacity to disseminate research. This work also provides guidelines for training peer researchers and ensuring that they are meaningfully engaged in research studies they are a part of.
© 2022. The Author(s).