Participant acceptability of ‘digital footprint’ data collection strategies: evidence from the index participants of the ALSPAC birth cohort study

Executive Summary
• ALSPAC have identified that digital footprint records offer new research utility and
are developing a strategy for incorporating these data into the study databank;
• It is imperative that this novel use of participant data is understood and acceptable in order to successfully establish linkage to these data whilst maintaining trust in the
wider study;
• ALSPAC are testing participant views and expectations through qualitative research
with participant groups to inform the design of our digital footprint strategy;
• The evidence collected to date suggests that participants are initially unfamiliar with
the rationale for using these forms of data in the ALSPAC research programme, and
are unsure as to what benefits this can bring;
• While some of these data are already in the public domain (e.g. twitter posts, air
pollution measures), there is a perception that this is a substantial change in the
studies data collection strategy;
• Some participants consider that some forms of digital footprint data are more
sensitive than others: with information on detailed online and transactional
behaviours considered particularly sensitive, as are precise location information,
bank records and medical records;
• Participants consider that maintaining confidentiality, receiving clear information
about any proposed data use and having mechanisms to retain control over the use
of their data are important safeguards when considering requests to use these data;
• Once the value and benefits are made clear, and subject to safeguard controls being
in place, then many – but not all – participants suggest they would be accepting of
this use of their records;
• The use of digital footprint records will introduce ethical challenges, but the majority
of these challenges align with existing ethical issues and can be accommodated
within existing study frameworks