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PT7:01 When dialogue becomes innovation: LupusGPT as a model of doctor–patient co-creation in rheumatology

lupusscimed · 2026-03-01 · canonical JSON source

7 visible annotations · policy: published · automated confidence ≥ 75.00%

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Objectives To illustrate how dialogue between patients and clinicians can generate tangible innovation in rheumatology, exemplified by the co-creation of LupusGPT — a multilingual, evidence-based AI tool designed to provide accurate, patient-friendly information on systemic lupus erythematosus (SLE).Methods LupusGPT originated as a direct result of a fishbowl discussion at the European Lupus Meeting (ELM) 2024 on exploring how the lupus community could work together to get the best out of artificial intelligence. Informed by findings from Lupus Europe’s 2024 Swiss Knife survey (Cornet et al., Autoimmun Rev, 2025), which revealed persistent communication gaps and low uptake—but high interest—in digital tools among over 4,500 European patients with lupus, this open dialogue evolved into a shared idea. Building on that foundation, Lupus Europe coordinated a collaborative development process, engaging lupus specialists, patients, and AI experts across Europe.Following EULAR 2023 recommendations on patient and public involvement (de Wit et al., Ann Rheum Dis, 2024, patients co-designed every stage — from defining ethical parameters and content selection to testing tone, accuracy, and inclusivity across European languages. Structured multilingual beta testing (June–September 2024) by 51 patients and clinicians became an ongoing two-way conversation: both groups tested, reviewed, and refined the language, phrasing, and retrieval logic together.Results This dialogue led to the creation of LupusGPT, a tool shaped and safeguarded by joint listening. Since its launch in June 2024, LupusGPT has answered 46 217 patient questions across 122 countries. EasyLupus, a companion feature for users with lower literacy, has answered 12 511 questions since October 2024. Beyond tool metrics, the process itself has been a result: both sides have supported and refined the tool through continuous exchange, transforming patient-physician communication from consultation into co-creation. This was further recognised by the Best emerging innovation award assigned in June 2025 by PFMD to Lupus GPT.Conclusions LupusGPT embodies a tangible result that can emerge when doctors and patients meet in genuine dialogue and co-creation. It demonstrates how patient-physician dialogue can evolve into collaboration, and collaboration into innovation. This success may encourage researchers, clinicians and patients to further collaborate so that new creative solutions can emerge from dialogue.