ArticleJNCI cancer spectrum2026
Digitally engaging participants in cancer clinical trials: Design and pilot of the Alliance Participant Engagement Portal (PEP).
Article in JNCI cancer spectrum, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundDigital tools may enhance clinical trial engagement by improving information flow and supporting participant-directed communication. The Alliance for Clinical Trials in Oncology developed the Participant Engagement Portal (PEP), a web-based platform for bidirectional communication and participant-reported data collection. We describe its user-centered development and pilot implementation within the NCI-sponsored Multi-Cancer Early Detection (MCED) Biobank Study (A212102).
methodsPEP was developed through iterative user-centered design processes that included advisory board input, usability testing with 19 patients (12 Spanish-speaking), and plain language and health-literacy refinement. PEP was introduced as an opt-in component of the MCED Biobank Study. PEP participants completed demographic and social determinants of health (SDOH) surveys. Implementation outcomes were assessed using participant and site-staff surveys.
resultsAmong 2221 MCED participants, 899 (40%) enrolled in PEP; 361 completed demographic items and 310 completed SDOH questions. Most participants reported a positive experience (84%), easy access (96%), and ease of survey completion (93%). PEP enrollment occurred at 154 of 630 open sites, with higher uptake in community than academic practices. Fidelity was moderate, with 38% completing baseline surveys and 32% completing SDOH items. Willingness to be re-contacted was high, with 93% agreeing to be contacted about future research and 98% open to health-related follow-up.
conclusionsA user-centered development approach produced a feasible, well-received digital engagement platform within a national oncology network. High willingness to contribute data and remain reachable suggests PEP may serve as an effective model for sustained participant engagement in cancer research.
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