GloPID-R Roadmap for Data Sharing in PHEs | Page 15

policies). Funders policies on data sharing in
PHEs can facilitate enhanced data sharing in
line with agreed principles. The review showed
that 12 out of the 15 funders* that respond-
ed had data sharing policies in place (ranging
from encouraging data sharing for limited data
to general policies requiring data sharing for
all data types), however only 6 out of those
15 funders had policies or grant conditions in
place referring to rapid data sharing in PHEs. An
important difference was noted as to wheth-
er conditions were included in policies (which
would apply to all grants) or grant conditions
(where appropriate conditions might be missed
for relevant grants funded in advance of an out-
break). Good practice was shown in grant con-
ditions that provided a backup condition for all
grants, which requires grantees to share data
rapidly if it turns out to be relevant to a PHE.
All rapid data sharing funders’ policies or
grant conditions referred to a PHE (with some
funders verbally commenting on a link to the
declaration of a Public Health Emergency of
International Concern (PHEIC) 18 ) as the trig-
ger for their ‘rapid’ data sharing conditions.
The definition of this PHE trigger was not well
articulated in any of the policies but is assumed
to relate to the WHO definition 16 . The funders’
review identified further definition of these trig-
gers as necessary and important in considering
when policies will be activated.
Existing policies and grant conditions vary in
their definition of ‘rapid’ data sharing. Most
funders convey that it was important for
data to be shared as close to ‘immediately’
as possible, however highlighting the consid-
erations limiting this ambition. Limitations
cited included: quality assurance processes;
safeguards to protect research participants
and patients’ confidentiality; ethical, legal and
commercial obligations; equity in research
and not jeopardising publication. Best practice
was shown by funders that set a time limit
(the EC states ‘one month’) on ‘rapid’ data
sharing to make their expectations clear (de-
spite acknowledging the potential limitations).
Advanced data planning and restricted access
arrangements were cited as an appropriate
way to address some of these limitations.
Indeed, Data Management Plans (DMPs) with
feasible mechanisms for rapid data sharing
(accounting for anticipated barriers) could be a
key tool to accelerate the speed of ‘rapid’ data
sharing in PHEs. DMPs are required by most
of the funders surveyed, either at the grant
application or award stage (including funders
with no data policies or grant conditions).
There was a clear interest in considering revi-
sions to these policies, with 9 of the 15 funders
expressing plans to update their policies or grant
conditions in these areas and many looking
for further guidance. Some funders, especially
national funders, are however limited in making
changes to their policies (which were often in-
stitution-wide and sometimes affected multiple
institutions). Recommendations for funders’
policies were made, based on the funders’
review, which are synthesised into this roadmap.
This roadmap provides guidance for all GloPID-R
funders, in improvements, which could fit within
their range of institutional limitations.
* There are 28 funder members of GloPID-R.
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