Data donation: Innovating public involvement in health research, Bristol Data Week 2024

Bristol Data Week is a platform for learning, discussion, and exploration of data science and AI applications. It offers a valuable opportunity for researchers, external partners, and community groups interested in technology and its societal impact to connect and collaborate. The event encourages the growth of existing networks while fostering the development of new connections.

Data donation refers to the act in that members of the public actively and individually provide their personal data collected by companies or governmental bodies to third-party organisations for research. Data donation provides valuable opportunities for population scientists through novel data linkage, e.g., associating survey responses or cohort study with transactional data on individual levels, but also presents significant challenges in data collection, storage infrastructure, and research ethics. In this workshop, Dr Neo Poon and Poppy Taylor discussed two research programs that utilise data donation and reflect on our data collection approach and the implications on public engagement.

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