Roundtable 'Data Protection for Health’ Paul Jackson · Roundtable 'Data Protection for Health’...
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Roundtable 'Data Protection for Health’ Paul Jackson Managing Director CESSDA Consortium of European Social Science Data Archives
Transcript of Roundtable 'Data Protection for Health’ Paul Jackson · Roundtable 'Data Protection for Health’...
Roundtable 'Data Protection for Health’
Paul Jackson
Managing Director
CESSDA
Consortium of European Social Science Data Archives
CESSDA and 47 other Research Infrastructures either implemented or still on the Roadmap
ESFRI Roadmaps
NSD©2015
2
ESFRI, August 2013
“Strengthening of central hubs in
relation to national nodes allows them
to operate as a single European
infrastructure.”
national policy
commission policy
european data
borderless data
borderless
research national data
european
research
national
research
global policy
european
evidence
national
evidence
borderless
evidence
Main Office
national
service
provider
national
service
provider
national
service
provider national
service
provider
national
service
provider
national
service
provider
national
service
provider
national
service
provider
“To provide a comprehensive, distributed and
integrated social science data research
infrastructure, facilitating access to social science
data resources for researchers, regardless of the
location of either researcher or data.”
CESSDA’s Mission
Yearly 70,000 international and national datasets to 50,000 researchers in Europe and beyond
• Unifying effect when building good practice
• Recognition that checks and balances can be different
from one purpose to another
• (Some) recognition that science, research, history and
statistics that service the public good are benign activities
GDPR - Strength
Data protection laws and practices remain real barriers to
statistics, science, history and research in Europe :
• Data Without Boundaries. (http://www.dwbproject.org)
• OECD Expert Group for International Collaboration on
Microdata Access. (http://www.oecd.org/std/microdata-
access-final-report-OECD-2014.pdf)
• Current framework has not built cross-border trust
• New framework should express the checks and balances
for these purposes in the positive, not the negative.
GDPR - Weakness
• “…regardless of the location of either researcher or data…”
• Positive contribution to European initiatives like
Horizon2020
• Harmonisation around good practice (technical, human) in
using personal data
• To make Europe the best place to do data science
GDPR - Opportunity
• Leakage of different ‘balance points’ into public service
science, statistics, history and research.
• Drafting in the style of a Directive.
• Move from a permissive default of “yes, as long as…”
- to prohibitive default of “no, not unless…”
• Different rules for essentially the same purposes
- (which conditions should apply to an historical social
science research project using statistical data?)
GDPR - Threat
• One framework for all science in the service of the public
good, expressed in the positive.
• That recognises personal identities are not in themselves
of any interest, but necessary to do good science.
• That allows us to build into our research infrastructures :
- pan European products and services
- common Codes of Practice to build public trust
- a clear division between “acceptable” and
“unacceptable” use of personal data for public science
GDPR - Positive outcome
She needs:
- Good quality data
- Compatibility
- Availability
- Predictable services
- One set of safety rules
- One set of permissions
- Support and guidance
- Freedom to explore
- Zones of specialisation
- Preservation of her work
What sort of infrastructure does she need?
