Perspective on patient and non-academic partner engagement for the responsible integration of large language models in health chatbots
Abstract
Uses of large language models (LLMs) in health chatbots are expanding into high-stakes clinical contexts, heightening the need for tools that are evidence-based, accountable, accurate, and patient-centred. This conceptual, practice-informed Perspective reflects on engaging patients and non-academic partners for the responsible integration of LLMs, grounded in the co-construction of MARVIN (for people living with HIV) and in an emerging collaboration with MIT Critical Data. Organised by the Software Development Life Cycle, we describe: conception/needs assessment with patient partners to identify use cases, acceptable trade-offs, and privacy expectations; development that prioritises grounding via vetted sources, structured human feedback, and data-validation committees including patient partners; testing and evaluation using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) chosen in collaboration with patients to capture usability, acceptability, trust, and perceived safety, alongside task performance and harmful-output monitoring; and implementation via diverse governance boards, knowledge-mobilisation materials to set expectations, and risk-management pathways for potentially unsafe outputs. Based on our experience with MARVIN, we recommend early and continuous engagement of patients and non-academic partners, fair compensation, shared decision-making power, transparent decision logging, and inclusive, adaptable governance that can…
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