Professor Anna Vignoles (Faculty of Education, University of Cambridge)
Andy Boyd (Avon Longitudinal Study of Parents and Children - ALSPAC)
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.
Please note, spaces are limited and participants are encouraged to apply early to secure a place.
During Lent Term the Ethics of Big Data group will explore the challenges of applying ethical reasoning in different contexts connected with Big Data research. Our invited speakers will present and discuss case studies from data-driven health and policy research in Africa, administrative data research in the UK, the implementation of eHospital, a new digital platform linking patient records across Cambridge University Hospitals and research using social media data, including a study of the Islamic State organisation.
The term's programme will finish with a public session on 9 March where an invited panel of experts from a range of different disciplines will be invited to consider a 'mock' research proposal which brings together a variety of the challenges from the real life case studies and present their reasoning to the audience for discussion.
If you have a question about this talk, please contact the Session Convenor: Anne Alexander
Open to all but registration is required and a 100 word statement to participate in any of the first four sessions.
The first four case study presentations will be 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.
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)"
Part of the Ethics of Big Data Research Group, series
Administrative assistance: firstname.lastname@example.org