About this event

Data donation: Innovating public involvement in health research

Data donation refers to the act that members of the public actively and individually provide their personal data collected by companies or governmental bodies to third-party organisations for research. For instance, through the right to data portability of the General Data Protection Regulation (GDPR), customers of a major supermarket chain in the UK can request their shopping data to be sent to a university. 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.

This workshop will discuss two research programmes utilising data donation, reflecting on our data collection approach and the implications on public engagement. (1) In order to accurately measure the prevalence of chronic pain and evaluate its impacts on workplace productivity and well-being, we asked participants (N = 953) to share their loyalty card data from a major supermarket with us via a survey, such that the purchases of pain reliefs can be quantified. We also asked participants to report the details of their pain conditions, hours of employment, and mental health states, therefore associating chronic pain with its economic and personal consequences. (2) As a first step to link health data from the Avon Longitudinal Study of Parents and Children (ALSPAC) to shopping records, we investigated the factors that influence individuals’ decisions to consent to data sharing, including gender, ethnicity, education, employment, socioeconomic status, and anxiety.

Overall, these studies contribute to ongoing discussions about privacy and the ethical use of digital footprints data, informing the development of more inclusive and transparent data collection processes in the field.

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Audience Level:

All, beginner-friendly

Learning Outcomes:

Insights into modern public health research and data donation practices

Speakers

Dr Romana Burgess, Senior Research Associate, Bristol Medical School

Dr Neo Poon, Senior Research Associate, Bristol Medical School 

Left to right: Romana Burges and Neo Poon

Dr Romana Burgess (She/Her)

Romana is a Senior Research Associate at the University of Bristol, focusing on the relationship between supermarket loyalty card data and population health and behaviour. Her PhD research – conducted as part of the Digital Health and Care CDT at the University of Bristol – explored how computational techniques can be harnessed to evaluate parent-infant interactions more efficiently. She also holds an undergraduate degree in mathematics (MMath).

Dr Neo Poon (He/Him)

Neo is a behavioural data scientist. He is currently a Senior Research Associate at the University of Bristol, and his research focuses on understanding personality traits from massive transactional data and predicting sociopolitical behaviours. His doctoral research (PhD Behavioural Science at Warwick Business School) covered a range of topics related to human decision making, including consumer choices and public opinions. He also has research experience in public health and patient well-being, as well as teaching experience in statistics and behaviour economics that led to multiple awards. Neo is experienced in R, Python, SQL, Bash, and JavaScript (React).

Bristol Data Week 2024

This event is part of Bristol Data Week 2024, organised by the Jean Golding Institute. Running from Monday 3rd June – Friday 7th June 2024, this will be our 7th annual Data Week; an interactive programme of speakers, training and workshops open to all and completely free of charge.

Keep up to date with sessions happening throughout Bristol Data Week on the Jean Golding Institute website follow us on Twitter @JGIBristol and use #BristolDataWeek.