A Mixed Methods Study: Visualizing Identity and Lived Experience in Patient Engagement

Background Evidence demonstrated that lived experiences and personal identities shape patient contributions when engaging in medical research as a patient partner. However, tools to understand these factors are lacking. This project explores word portraits as a participatory method to capture layered identities and lived experiences of patients, researchers, and collaborators in the University of South Carolina (USC) Patient Engagement Studio (PES). Methods An exploratory mixed-methods approach was employed to co-develop and pilot word portraits as a tool for visualizing the layered lived experiences of Patient Experts and other PES stakeholders. Respondents opted in by completing a researcher-developed survey where they identified self-descriptive words and assigned importance weights to demographic categories. These responses were used to generate individualized and group-level word portraits, with reflexivity practiced throughout the process. Thematic analysis was performed. Results Of the individual word portraits, 45 were generated, 10 requested revisions, 5 were revised over Zoom, and 5 were revised through email. Several participants sought clarification on the context and application of the individual portraits. Several participants noted their portrait would likely change depending on their role, subject matter, stage of research process, or additional change in context. Importance weights assigned to demographic descriptors were commonly, though not always, reflective of minority status. The health conditions, disabilities, or chronic conditions most impacting respondents or someone they care for, as determined by average importance weight, were long COVID (95), deconditioning (80.0), and neurodevelopmental disorder (72.7). The group favored the group word portrait that preserved the exact phrases provided by the participants and represented category frequency by word size. Conclusions Importance weights are a viable means for generating an individual word portrait, while word size representative of category frequency worked best for the group word portrait. It was determined by both the research team and the participants that layered lived experience word portraits are a viable means for engagement in participatory research. By promoting identity-centered reflection and representation, the word portrait method advances the science and practice of inclusive, reflexive patient engagement by recognizing intersectional contexts, diverse identities, and lived experiences from an individual as well as a group perspective. Trial registration not applicable