GloPID-R Roadmap for Data Sharing in PHEs | Page 22

ACCESSIBLE: CHALLENGES
& POTENTIAL SOLUTIONS
D
ata pertaining to PHEs should be shared with as few restrictions, either
technical or legal, as possible. Providers of data should clearly indicate
what, if any, conditions are in place.
ACCESSIBLE
DATA SHARING
PRINCIPLE
COMMERCIAL INTERESTS
A major barrier to accessible research data
sharing highlighted by the case studies related
to the involvement of commercial interests. Non-
disclosure agreements may restrict researchers’
ability to make data available. Companies may
also be reluctant to share negative findings
because of commercial implications. Funders
can align for further direct dialogue with indus-
try partners to enable greater transparency
through data-sharing agreements developed
for Product Development Partnerships (PDPs)
and other public-private partnerships. Where no
public-private partnership exists discussion with
industry associations may be productive.
LEGAL
Data transfer from one country to anoth-
er must be compliant with national and
international regulations. Pre-approved systems
for data sharing are need including federated
data systems. Anonymisation of data is of high
importance and appropriate protocols need to
be put in place and assured.
TECHNICAL
A review of data from published research on
pathogens of epidemic and pandemic con-
cern (excluding case-reports which by nature
provide individual patient data) showed that
only 31% of the data were accessible (provided
access to all the data underlying the paper,
without having to request it from authors) and
that 57% of these were as datasets in PDF for-
mat (which do not allow for easy data scraping
or indexing) within supplementary material 15 .
Further use of data sharing platforms would
improve open data sharing.
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