GloPID-R Roadmap for Data Sharing in PHEs | Page 39

ANNEXES
ANNEX A. SUMMARY OF
EXISTING WHO GUIDANCE
ON DATA SHARING IN PHEs
The WHO has led on policy in this field with a
range of guidance including:
— The Developing Global Norms for Sharing
Data and Results During Public Health
Emergencies Statement 5 arising from a WHO
consultation in 2015 highlights the importance
of timely data sharing on clinical, epidemiologi-
cal and genetic features of emerging diseases
as well as information on experimental diag-
nostics, therapeutics and vaccines. It recog-
nises that epidemiological data belong to the
countries where they were generated, but that
the default is that this data should be shared.
It also recognises that pathogen genetic
sequence and associated clinical and epidemio-
logical data are of the greatest value if made as
openly available, in as close to real time as pos-
sible during a PHE. It also highlighted the role
for funders in requiring that expedited timelines
for sharing data & interim results in PHEs are a
pre-condition for study initiation and continua-
tion. The meeting finally recognised the impera-
tive for capacity strengthening to enable locally
led research & structures for data sharing in
low- and middle-income countries.
— The Pandemic Influenza Preparedness
framework (PIP framework) provides guidance
for the sharing of potentially pandemic influen-
za viruses and associated data 17 .
— WHO’s recent ‘Code of conduct for open and
timely sharing of pathogen genetic sequence
data during outbreaks of infectious disease’ 6
recognises pathogen sequencing as a priority
during outbreaks and seeks to enable rapid
sharing of pathogen genetic sequence data in
accordance with IHR 200514 through address-
ing the needs of data providers around the
world to enable trust. It sets a timeline for data
generation and release not exceeding 21 days
and provides a Material Transfer Agreement
(MTA) capacity building tool and draft disclaim-
er text for sharing of data.
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