GloPID-R Roadmap for Data Sharing in PHEs | Page 12

SETTING THE SCENE
Data sharing is an expectation within research,
with most funders and journals requiring it fol-
lowing research publication in order to improve
research impact. The importance of heightened
and rapid sharing of research data in advance
of publication has been highlighted for PHEs,
given the time lag to publication 11, 12, 13,14,15 . PHEs
are defined by the WHO as “an occurrence or
imminent threat of an illness or health con-
dition, caused by bio terrorism, epidemic or
pandemic disease, or a novel and highly fatal
infectious agent or biological toxin, that poses
a substantial risk of a significant number of
human facilities or incidents or permanent or
long-term disability” 16 . Rapid data sharing in
PHEs is predicted to accelerate health benefits
through; facilitating research projects, reducing
the duplication of work and ensuring a clearer
picture of epidemiology and pathology through
pooled results to improve intervention effec-
tiveness in current or future PHEs.
Timeliness is of highest importance to enable
both research and health systems data to guide
responses during infectious disease outbreaks
and preparedness for future outbreaks. This
need for timely data sharing does however
need to be balanced against a range of ethical,
legal, political and social considerations 9 . The
quality of the data to be shared also needs to
be appropriately assured to ensure correct
decisions are made.
GloPID-R funders and other stakeholders have
taken a range of policy steps in this area (as
outlined in the following sections) but further
high-level commitment and action is needed.
GloPID-R’s recently commissioned case-stud-
ies 2 show data sharing has certainly occurred
during recent Public Health Emergencies, but
that many opportunities were lost through
barriers to data sharing. The GloPID-R funders’
review 4 shows that many funders are looking
for guidance in this area and are willing to act.
The importance of collaboration is also high-
lighted and there is a need for further engage-
ment of National Funders and other National
and Regional bodies in the affected countries
and with further stakeholders.
STATEMENTS, CODES OF
CONDUCT & COMMITMENTS
ON DATA SHARING IN PHEs
The global community has taken a range of
steps to encourage timely data sharing during
recent PHEs and made commitments for
future PHEs.
The WHO has led on policy in this field with a
range of guidance including ‘Developing Global
Norms for Sharing Data and Results During
Public Health Emergencies Statement’ 5 , the
‘Pandemic Influenza Preparedness Framework’ 17
and its recent ‘Code of conduct for open and
timely sharing of pathogen genetic sequence
data during outbreaks of infectious disease’ 7
(see Annex A for summaries).
12