4. ANDS and the health and medical research community
Health-y data workshops (2015/16)
(7 workshops, 500 professionals)
Funded projects CRC, MRI
NHMRC relationship
Health data community group (23 Things)
10 medical and heath research data Things
Health Libraries Australia
Medical editors
Health and medical data webinar series
10. Data sharing landscape
Funders
NHMRC Statement on Data Sharing
Human Research Ethics Application (HREA)
National Statement on Ethical Conduct in Human Research (consent to future use)
Discovery, linkage Data Management Plan
11.
12. “NHMRC-funded researchers are encouraged to consider from the earliest stages of
research planning how their research data will be obtained, managed, curated, stored
and disseminated into an appropriate, publicly accessible database.”
NHMRC Statement on Data Sharing (2016)
24. Identifiable*
Re-identifiable*
Non-identifiable*
De-identification/
Anonymisation
removing identifying
information
(‘identifiers’) for
publishing, sharing or
reuse
Identifiers
removed from
main dataset and
replaced by a
code.
Code is stored
separately
(preferably
encrypted)
Identifiers
permanently
removed
Recombining the re-
identifiable data set
and the identifiers
OR
Linking different data
sets
No specific individual can be identified
Possible to re-identify an individual
Identity of an individual can be
reasonably ascertained
Data set can be created as non-identifiable
by never being labelled with identifiershttp://www.ands.org.au/working-with-
data/sensitive-data/de-identifying-data
* Terms from National Statement on
Ethical Conduct in Human Research
2007 (Updated May 2015)
Data de-identification