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SUMMARY:Ethics of Big Data in practice: Administrative data  - Andy Boyd (
 Avon Longitudinal Study of Parents and Children - ALSPAC)
DTSTART:20160210T120000Z
DTEND:20160210T140000Z
UID:TALK63793@talks.cam.ac.uk
CONTACT:Clare Dyer-Smith
DESCRIPTION:This session will explore the ethico-legal challenges faced by
  by the research community when using routine health and social administra
 tive records in a secondary context. There will be a particular focus on t
 he use of individual-level data in longitudinal research studies. I will d
 iscuss: the characteristics of ethical\, or 'bona-fide'\, research\; publi
 c views on the use of their information\; the involvement of the public (a
 s research participants) in the research process\; consent\; information p
 rivacy and anonymity\; and the use of technological\, procedural and data 
 processing tools to meet diverse ethical challenges and safeguard particip
 ant interests.\n\n \n\nAndy Boyd is the Data Linkage & Information Securit
 y Manager at the Avon Longitudinal Study of Parents and Children (ALSPAC) 
 - a birth cohort study which has followed the health and development of ~1
 5\,000 families from the Bristol area over the last 25 years (www.bristol.
 ac.uk/alspac).\n\nAndy 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 cohor
 t consortium project (a consortium of eight of the leading UK birth cohort
  and longitudinal studies) which aims to develop technological and procedu
 ral solutions to overcome ethico-legal barriers to the use of routine reco
 rds in research.\n\n \n\nRegistration \n\nPlease note\, spaces are limited
  and participants are encouraged to apply early to secure a place.\n\n Thi
 s session is open to researchers by application and discussion will be con
 ducted under Chatham House rules. If you are interested in attending pleas
 e register at\n\nhttp://www.bigdata.cam.ac.uk/research/the-ethics-of-big-d
 ata/workshop-registration/Lent2016\n\n and express your interest with a 10
 0 word statement\, explaining how your research will benefit from particip
 ation in the session\n\n \n\nRecommended reading:\n\n Data Safe Havens in 
 health research and healthcare.\n\n(http://www.ncbi.nlm.nih.gov/pubmed/261
 12289)\n\nDataSHIELD: taking the analysis to the data\, not the data to th
 e analysis. (http://www.ncbi.nlm.nih.gov/pubmed/25261970)\n\n \n\nand for 
 those curious about ALSPAC:\n\nCohort Profile: The 'Children of the 90s'
 —the index offspring of the Avon Longitudinal Study of Parents and Child
 ren (http://www.ncbi.nlm.nih.gov/pubmed/22507743)"
LOCATION: Room SG1\, Alison Richard Building\, 7 West Road\, Cambridge\, C
 B3 9DT
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