IJPDS International Journal of Population Data Science

Our ‘digital footprints’ are the tracks and traces we leave behind when we use the internet, digital devices such as fitness trackers, and online services. As these footprints provide insights into people’s behaviours, these data have huge potential to improve researchers’ abilities to discover greater levels of understanding about people and populations.

In fact, digital footprint data are deemed such a valuable resource, particularly for social science and epidemiology research, that the main funders of longitudinal research in the UK are now actively encouraging the incorporation of digital footprint records into study data collection strategies. But how do members of the public really feel about the use of their online data, and what do they think is acceptable?

Well, the only way to find out is straight from the horse’s mouth. Or in this case, from the participants of the Avon Longitudinal Study of Parents and Children (ALSPAC) birth cohort study who contributed their insights into this complex issue through focus groups and other group discussions. Their views were gathered on sharing various types of digital footprint data, such as loyalty card records, social media data and personal location data, and the findings presented in this new study published in The International Journal of Population Data Science (IJPDS).

Central to the ALSPAC approach is to involve participants at various stages of research development and, in this instance, in the development of new frameworks for ethical data processing. These frameworks will then guide the way forward in terms of how digital footprint data will be collected and shared in the future whilst always safeguarding participant interests.

The focus groups produced some interesting results.

Firstly, participants would want to be reassured of the value, validity and risks of sharing such data.

Secondly, the use of digital footprint data should allow people some level of control over sharing elements of the data they consider sensitive, such as their location. Plus, there is a concern about using data that may also include information about third parties such as family, friends and in particular, children.

Thirdly, participants insist on being given the ability to authorise or object to their data being used, and finally, how much they trust an organisation to access and use digital footprint data ethically is a must.

Naturally, different people will have different perceptions of using digital footprint data to enhance research which are often shaped by personal, health and social circumstances. Add to this well-publicised instances of data misuse, and increasing awareness of personal data being used as a commodity, it is understandable that overall there is likely to be a general lack of trust in organisations collecting data in these early stages.

Andy Boyd, co-author on the paper and Director of the UK Longitudinal Linkage Collaboration emphasised the value of the study: “Understanding how participants feel about sharing their digital footprint data and exploring the type of controls they would want in place is crucial for researchers when developing ethical frameworks for data sharing and ensuring future participants trust researchers with their data.”

Click here to read the full open access article

 

Dr Kate Shiells, Research Associate, MRC Integrative Epidemiology Unit, Bristol Medical School, University of Bristol

Shiells, K., Di Cara, N., Skatova, A., Davis, O. ., Haworth, C., Skinner, A., Thomas, R., Tanner, A., Macleod, J., Timpson, N. and Boyd, A. (2022) “Participant acceptability of digital footprint data collection strategies: an exemplar approach to participant engagement and involvement in the ALSPAC birth cohort study”., International Journal of Population Data Science, 7(1). doi: 10.23889/ijpds.v7i2.1728.