A Human-Centered Framework to Capture the Holistic Pain Story in Chronic Pain: Protocol for a Multicenter Observational Feasibility Study

Abstract

Abstract Background Standardized metrics such as the numeric rating scale (NRS) provide essential quantitative pain benchmarks but can be augmented by capturing the functional and emotional context of a patient’s lived experience. Adding surveys creates a “contextual disconnect” (increasing data yield with diminishing insights) and adds patient burden. The CONNECT (Collecting Communication Data to Enhance Patient-Physician Interaction) study proposes a structured, multimodal framework integrating patient narratives, drawings, and mobility assessments to capture each patient’s holistic “pain story” and create a comprehensive ground truth dataset for developing digital health tools. Objective This study aims to (1) evaluate the feasibility of capturing multimodal communication data (narratives, drawings, and mobility) from patients with chronic pain, (2) quantify gaps between standard clinical metrics (eg, the NRS) and patient-defined key functional limitations, and (3) evaluate the usability and perceived communication value of software prototypes (myStory). Methods CONNECT is a multiphase, multicenter, exploratory feasibility study using human-centered design. Up to 3 tertiary care interventional pain practices in the United States will enroll 2 mutually exclusive cohorts (up to 40 patients each). Phase 1 conceptualizes the patient narrative as a “clinical sensor,” collecting a foundational ground truth dataset via video-recorded pain narratives, guided drawings, standardized mobility assessments, and validated surveys. Phase 2 uses phase 1 learnings to develop and evaluate up to 5 myStory prototypes, assessing utility, usability, and perceived communication value via task-based evaluation and think-aloud protocols. Exploratory analyses include dual-coder thematic analysis, pose estimation mobility assessments, and AI-assisted narrative summarization. Results Recruitment began in May 2026. As of September 2026, one site is active, with 37 participants enrolled. Anticipated outcomes include (1) a rich, multimodal dataset establishing a ground truth of patient-derived functional limitations, goals, and expectations; (2) characterization of pain story gaps missed by the NRS via the contextual disconnect rate (defined as NRS ≤6 with ≥1 key functional limitation); (3) evaluation of at least one feasible prototype concept (mean score of 3.0 on a 5-point Likert scale); and (4) initial user testing of new communication assessment scales. Results are anticipated in late 2026 and will be disseminated through peer-reviewed publications and conferences. Conclusions This protocol establishes a reproducible framework for understanding the holistic “pain story” by capturing narrative, visual, and functional dimensions of chronic pain. Findings will inform new communication tools intended to enhance patient-provider communication and align care with outcomes that matter most to patients with chronic pain.