Ethics of Big Data in practice: Administrative data

Add to your list(s) Download to your calendar using vCal

• Andy Boyd (Avon Longitudinal Study of Parents and Children - ALSPAC)
• Wednesday 10 February 2016, 12:00-14:00
• Room SG1, Alison Richard Building, 7 West Road, Cambridge, CB3 9DT.

If you have a question about this talk, please contact Clare Dyer-Smith.

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)”

This talk is part of the Ethics of Big Data series.

This talk is included in these lists:

• Room SG1, Alison Richard Building, 7 West Road, Cambridge, CB3 9DT
• Cambridge Centre for Data-Driven Discovery (C2D3)
• Cambridge talks
• Cardiovascular Epidemiology Unit Special Seminars
• Chris Davis' list
• Department of Public Health and Primary Care
• Ethics of Big Data
• Interested Talks
• PublicHealth@Cambridge
• Trust & Technology Initiative - interesting events
• bld31
• ndk22's list
• ob366-ai4er
• rp587

Note that ex-directory lists are not shown.