Digital footprint records – the tracks and traces we leave behind every time we interact with the internet, digital devices, and services – have great potential to enhance longitudinal population studies as they provide very granular data, are collected at a rapid cadence, and give insights into our behaviours. Here, Kate Shiells (former Research Associate at the MRC Integrative Epidemiology Unit) and Andy Boyd (Director of the UK Longitudinal Linkage Collaboration) explore their latest research, analysing feedback from study participants on the use of such data.
Digital footprint records present an exciting opportunity for epidemiological and social science investigations. As a result, many primary funders of the UK’s longitudinal research are encouraging studies to start incorporating linkage to these data into their data collection strategies. However, this does risk straining participant trust and notions of what is seen as acceptable from the perspective of research volunteers.
It is therefore vital that before seeking to obtain novel sources of data, study managers engage with participants to involve them in the development of ethical data processing frameworks that facilitate data collection and sharing whilst also safeguarding participant interests. This engagement is essential given that participants are likely to hold differing perceptions (shaped by health and social circumstances), the wider loss of trust in organisations collecting data as a result of well-publicised misuses, and an increasing awareness of personal data as a commodity.
It is also important to note that the advent of the EU General Data Protection Regulations (and equivalent strong public rights legislation in jurisdictions such as Canada and California) are setting an expectation amongst the public as to how their data will be used, which may not fully reflect possibilities open to those conducting public good research. If not carefully considered, these discrepancies can introduce an additional tension into approaches to establish linkages with participants.
In our research, we outline the participant involvement approach used by the Avon Longitudinal Study of Parents and Children (ALSPAC) birth cohort study to inform the development of a framework for using linked participant digital footprint data. We describe five qualitative forms of inquiry, such as focus groups and discussions with the ALPSAC advisory panel, which were used to gauge cohort members’ views on sharing various types of digital footprint data (loyalty card records, social media data and personal location data, for example).
Participants stipulated a range of conditions that they associated with the acceptability of sharing digital footprint data for linkage into the ALSPAC databank. Firstly, participants require information on the value, validity and risks of sharing these novel data. They also require control over sharing elements of the data they consider sensitive, such as location data, and are concerned about the use of data revealing information about third parties. Finally, appropriate mechanisms to authorise or object to their records being used together with high levels of trust in the organisation accessing the data were shown to be crucial to consent.
In summary, realising the potential for using digital footprint records within longitudinal research must be subject to participant co-development informing ethical-governance framework for these novel linkages in a manner which does not undermine the study’s role of trusted data custodian.
Further information
- Related: Data linkage at CLOSER
- Related: Data linkage (social media data) at CLOSER
- Research paper: Participant acceptability of digital footprint data collection strategies: an exemplar approach to participant engagement and involvement in the ALSPAC birth cohort study
- Study profile: Avon Longitudinal Study of Parents and Children (ALSPAC)
Kate Shiells is a former Research Associate at the MRC Integrative Epidemiology Unit, Bristol Medical School, University of Bristol.
Andy Boyd is Director of the UK Longitudinal Linkage Collaboration.
Suggested citation:
Shiells, K. and Boyd, A. (2022). ‘ALSPAC cohort members provide invaluable input into the development of digital footprint linkage frameworks’. CLOSER. 18 March 2022. Available at: https://www.closer.ac.uk/news-opinion/blog/alspac-cohort-members-provide-invaluable-input-into-the/