Abstract

This session will explore the ethico-legal challenges faced by by the research community when using routine health and social administrative records in a secondary context. There will be a particular focus on the use of individual-level data in longitudinal research studies. I will discuss: the characteristics of ethical, or ‘bona-fide’, research; public views on the use of their information; the involvement of the public (as research participants) in the research process; consent; information privacy and anonymity; and the use of technological, procedural and data processing tools to meet diverse ethical challenges and safeguard participant interests.

Andy Boyd is the Data Linkage & Information Security Manager at the Avon Longitudinal Study of Parents and Children (ALSPAC) – a birth cohort study which has followed the health and development of ~15,000 families from the Bristol area over the last 25 years (www.bristol.ac.uk/alspac).

Andy manages the ALSPAC work programme to integrate the routine records of study participants into the ALSPAC DataBank and prepare them for research use. Andy also leads a work program at the CLOSER cohort consortium project (a consortium of eight of the leading UK birth cohort and longitudinal studies) which aims to develop technological and procedural solutions to overcome ethico-legal barriers to the use of routine records in research.

Registration

Please note, spaces are limited and participants are encouraged to apply early to secure a place.

This session is open to researchers by application and discussion will be conducted under Chatham House rules. If you are interested in attending please register at

http://www.bigdata.cam.ac.uk/research/the-ethics-of-big-data/workshop-registration/Lent2016

and express your interest with a 100 word statement, explaining how your research will benefit from participation in the session

Recommended reading:

Data Safe Havens in health research and healthcare.

(http://www.ncbi.nlm.nih.gov/pubmed/26112289)

DataSHIELD: taking the analysis to the data, not the data to the analysis. (http://www.ncbi.nlm.nih.gov/pubmed/25261970)

and for those curious about ALSPAC :

Cohort Profile: The ‘Children of the 90s’—the index offspring of the Avon Longitudinal Study of Parents and Children (http://www.ncbi.nlm.nih.gov/pubmed/22507743)”