Use of Comprehensive Participatory Planning and Evaluation in Rural Patient Engagement.

Comprehensive participatory planning and evaluation (CPPE), a model used in community engagement research, has not been applied to patient engagement in research. We describe our methodology and interim results using CPPE in a project focused on improving research engagement of rural and distant patients and stakeholders. Specifically, we describe our development of a causal map and the subsequent use of the map to guide patient and stakeholder-driven evaluation.

Exploring Lived Experiences of Chronic Pain Through Photo-Elicitation and Social Networking.

OBJECTIVE: To understand how patients' use of photo-elicitation and online social networks (Facebook) enhances their understanding of what it means to live with pain. DESIGN: Qualitative substudy of the intervention arm of a randomized trial. SETTING/SUBJECTS: Primary care patients living with pain drawn from nine family practices with at least two pain visits in the last six months. METHODS: The private Facebook group was co-facilitated by a moderator and a patient-investigator who lives with chronic pain. Patients were asked to share photos that elicit their lived experience with chronic pain, and facilitators guided participants in ongoing discussion about these photos, and thus the life with pain. Facebook discussions were analyzed via Dedoose (a qualitative analysis software) using thematic analysis. RESULTS: Discussions of photos elicited three overarching themes regarding patients' lived experience with chronic pain: 1) patients' redefined pain identity; 2) pain interference with enjoyment of life and activities; and 3) patients' diminished ability to function. CONCLUSIONS: Photo-elicitation is an innovative way to shed light on patients' lived experience with chronic pain. Despite some technical challenges, Facebook support groups utilizing photo-elicitation can provide a readily available platform that can facilitate interchange of patient experiences and might help patients communicate with their providers.