Boyd, Andy

Davis, Oliver S.P.

Di Cara, Nina

Haworth , Claire M A

Macleod, John A A

Shiells, Kate

Skatova, Anya

Skinner, Andrew L

Tanner, Alastair

Thomas, Richard G

Timpson, Nicholas John

English

Executive Summary• ALSPAC have identified that digital footprint records offer new research utility andare 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 thewider study;• ALSPAC are testing participant views and expectations through qualitative researchwith participant groups to inform the design of our digital footprint strategy;• The evidence collected to date suggests that participants are initially unfamiliar withthe rationale for using these forms of data in the ALSPAC research programme, andare unsure as to what benefits this can bring;• While some of these data are already in the public domain (e.g. twitter posts, airpollution measures), there is a perception that this is a substantial change in thestudies data collection strategy;• Some participants consider that some forms of digital footprint data are moresensitive than others: with information on detailed online and transactionalbehaviours considered particularly sensitive, as are precise location information,bank records and medical records;• Participants consider that maintaining confidentiality, receiving clear informationabout any proposed data use and having mechanisms to retain control over the useof 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 beingin place, then many – but not all – participants suggest they would be accepting ofthis use of their records;• The use of digital footprint records will introduce ethical challenges, but the majorityof these challenges align with existing ethical issues and can be accommodatedwithin existing study framework

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

https://research-information.bris.ac.uk/files/312130198/ALSPAC_Report_Acceptability_Novel_Linkage_December2019.pdf

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

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