B3406 - Acceptability to participants of novel data linkages ethical issues and the practicalities of obtaining consent Evidence from - 21/11/2019

B number: 
B3406
Principal applicant name: 
Andy Boyd | University of Bristol
Co-applicants: 
Kate Shiells, Oliver Davis, Andy Skinner, Nic Timposn
Title of project: 
Acceptability to participants of novel data linkages, ethical issues, and the practicalities of obtaining consent: Evidence from
Proposal summary: 

This project will summarise and collate information gathered by ALSPAC and TwinsUK describing participant understanding and feelings towards 'novel' methods of data collection. This is in response to rapid changes in possibilities for data collection which are emerging from the rapid digitisation of routine information, that many people now routinely carry powerful computers (mobile phones, smart devices), and that many devices are now connected to the internet (e.g. smart doorbells and smart thermostats). There is potentially very valuable information which can be collected through either linking to individuals' records or by collecting the 'Digital Footprint' records left through using digital connected devices. In addition, these connected devices - e.g. mobile phones, or smart speakers - provide an opportunity to collect data in new ways.

It is vitally important that studies - such as ALSPAC and TwinsUK - understand participants views on this. This is so that studies can understand what is acceptable and what is not, what safeguards are needed to ensure acceptability, and how to inform participants about these new options and how they could work. This project is summarising existing information, it is not collecting any new information.

Impact of research: 
To inform funders and longitudinal studies about the potential for novel 'Digital Footprint' data sources and to emphasis the ethical and safeguard dimensions to this.
Date proposal received: 
Monday, 11 November, 2019
Date proposal approved: 
Monday, 11 November, 2019
Keywords: 
Statistics/methodology, study methodology, research ethics, data linkage., Qualitative study, Cohort studies - attrition, bias, participant engagement, ethics