Health systems are moving towards a personalisation of care. Personalised care relies on data-intensive research, which depends on active participation by citizens in data generation and information sharing. Collecting and sharing one’s data for research can deliver several benefits. However, it also comes at a cost in time and effort that may burden different population subsets to varying degrees. This study aimed to assess patients’ and carers’ willingness to generate and share health data, and its associated factors, to inform the design of inclusive engagement strategies.

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• Ciências da Saúde - Ciências Médicas