{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T18:53:19Z","timestamp":1791571999512,"version":"4.3.4"},"reference-count":40,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Res Protoc"],"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n 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\u2019s lived experience. Adding surveys creates a \u201ccontextual disconnect\u201d (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\u2019s holistic \u201cpain story\u201d and create a comprehensive ground truth dataset for developing digital health tools.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n 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).<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n 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 \u201cclinical sensor,\u201d 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.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n 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 \u22646 with \u22651 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.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n This protocol establishes a reproducible framework for understanding the holistic \u201cpain story\u201d 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.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/95222","type":"journal-article","created":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T18:15:26Z","timestamp":1791569726000},"page":"e95222-e95222","source":"Crossref","is-referenced-by-count":0,"title":["A Human-Centered Framework to Capture the Holistic Pain Story in Chronic Pain: Protocol for a Multicenter Observational Feasibility Study"],"prefix":"10.2196","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0009-0005-0756-5404","authenticated-orcid":false,"given":"Jodi Townsley","family":"Dubuclet","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7180-5047","authenticated-orcid":false,"given":"Krishna","family":"Badhiwala","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8704-6938","authenticated-orcid":false,"given":"David","family":"Page","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-4494-4190","authenticated-orcid":false,"given":"Scott","family":"DeBates","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-9537-7899","authenticated-orcid":false,"given":"Vivek Kumar","family":"Tyagi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9034-0735","authenticated-orcid":false,"given":"Binesh","family":"Balasingh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-0878-7836","authenticated-orcid":false,"given":"Eric","family":"Carpenter","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kiran V","family":"Patel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2026,10,9]]},"reference":[{"issue":"sup2","key":"R1","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1080\/10810730.2016.1193918","article-title":"Development of a communication intervention for older adults with limited health literacy: photo stories to support doctor-patient communication","volume":"21","author":"Koops van \u2019t Jagt","journal-title":"J Health Commun"},{"issue":"2","key":"R2","doi-asserted-by":"publisher","first-page":"71","DOI":"10.5005\/jp-journals-10035-1040","article-title":"A study of patient-physician communication and barriers in communication","volume":"3","author":"Mittal","journal-title":"Int J Res Foundation Hosp Healthc Adm"},{"issue":"11","key":"R3","doi-asserted-by":"publisher","first-page":"1257","DOI":"10.1111\/ijcp.12686","article-title":"Communication in healthcare: a narrative review of the literature and practical recommendations","volume":"69","author":"Vermeir","journal-title":"Int J Clin Pract"},{"key":"R4","doi-asserted-by":"publisher","DOI":"10.2196\/41788","article-title":"Developing digital therapeutics for chronic pain in primary care: a qualitative human-centered design study of providers\u2019 motivations and challenges","volume":"7","author":"Ma","journal-title":"JMIR Form Res"},{"key":"R5","unstructured":"Brodeur PK Koshy JM Palepu A et al. 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