npj Digital Medicine,
Journal Year:
2025,
Volume and Issue:
8(1)
Published: May 14, 2025
Summary
Anonymized
biomedical
data
sharing
faces
several
challenges.
This
systematic
review
analyzes
1084
PubMed-indexed
studies
(2018–2022)
using
anonymized
to
quantify
usage
trends
across
geographic,
regulatory,
and
cultural
regions
identify
effective
approaches
inform
implementation
agendas.
We
identified
a
significant
yearly
increase
in
such
with
slope
of
2.16
articles
per
100,000
when
normalized
against
the
total
number
(
p
=
0.021).
Most
used
from
US,
UK,
Australia
(78.2%).
trend
remained
by
country-specific
research
output.
Cross-border
was
rare
(10.5%
studies).
twelve
common
sources,
primarily
US
(seven)
UK
(three),
including
commercial
public
entities
(five).
The
prevalence
anonymization
suggests
their
practices
could
guide
broader
adoption.
Rare
cross-border
differences
between
countries
comparable
regulations
underscore
need
for
global
standards.
Clinical and Experimental Dermatology,
Journal Year:
2024,
Volume and Issue:
49(7), P. 675 - 685
Published: March 29, 2024
Abstract
Artificial
intelligence
(AI)
solutions
for
skin
cancer
diagnosis
continue
to
gain
momentum,
edging
closer
towards
broad
clinical
use.
These
AI
models,
particularly
deep-learning
architectures,
require
large
digital
image
datasets
development.
This
review
provides
an
overview
of
the
used
develop
algorithms
and
highlights
importance
dataset
transparency
evaluation
algorithm
generalizability
across
varying
populations
settings.
Current
challenges
curation
clinically
valuable
are
detailed,
which
include
shifts
arising
from
demographic
variations
differences
in
data
collection
methodologies,
along
with
inconsistencies
labelling.
can
lead
differential
performance,
compromise
utility,
propagation
discriminatory
biases
when
developed
implemented
mismatched
populations.
Limited
representation
rare
cancers
minoritized
groups
existing
highlighted,
further
skew
performance.
Strategies
address
these
presented,
improving
transparency,
interoperability.
Federated
learning
generative
methods,
may
improve
size
diversity
without
compromising
privacy,
also
examined.
Lastly,
we
discuss
model-level
techniques
that
entrained
through
use
derived
routine
care.
As
role
becomes
more
prominent,
ensuring
robustness
underlying
is
increasingly
important.
Orphanet Journal of Rare Diseases,
Journal Year:
2024,
Volume and Issue:
19(1)
Published: April 6, 2024
Abstract
Background
Patient
registries
and
databases
are
essential
tools
for
advancing
clinical
research
in
the
area
of
rare
diseases,
as
well
enhancing
patient
care
healthcare
planning.
The
primary
aim
this
study
is
a
landscape
analysis
available
European
data
sources
amenable
to
machine
learning
(ML)
their
usability
Rare
Diseases
screening,
terms
findable,
accessible,
interoperable,
reusable(FAIR),
legal,
business
considerations.
Second,
recommendations
will
be
proposed
provide
better
understanding
health
ecosystem.
Methods
In
period
March
2022
December
2022,
cross-sectional
using
semi-structured
questionnaire
was
conducted
among
potential
respondents,
identified
main
contact
person
health-related
databases.
design
self-completed
survey
instrument
based
on
information
drawn
from
relevant
scientific
publications,
quantitative
qualitative
research,
scoping
review
challenges
mapping
disease
(RD)
To
determine
database
characteristics
associated
with
adherence
FAIR
principles,
legal
aspects
management
Bayesian
models
were
fitted.
Results
total,
330
unique
replies
processed
analyzed,
reflecting
same
number
distinct
(no
duplicates
included).
geographical
scope,
we
observed
24.2%
(
n
=
80)
national,
10.0%
33)
regional,
8.8%
29)
European,
5.5%
18)
international
coordinated
Europe.
Over
80.0%
269)
still
active,
approximately
60.0%
191)
established
after
year
2000
71.0%
last
collected
new
2022.
Regarding
highest
overall
adherence,
while
regional
“other”
scope
ranked
at
bottom
list
lowest
proportion.
Responders’
willingness
share
contribution
goals
Screen4Care
project
evaluated
end
survey.
This
question
completed
by
108
respondents;
however,
only
18
them
(16.7%)
expressed
direct
contribute
sharing
Among
them,
an
equal
split
between
pro-bono
paid
services
observed.
Conclusions
most
important
results
our
demonstrate
not
enough
sufficient
principles
low
EU
information,
combined
some
legislation
incapacities,
resulting
barriers
secondary
use
data.
npj Digital Medicine,
Journal Year:
2024,
Volume and Issue:
7(1)
Published: July 4, 2024
Digital
health
is
increasingly
promoting
open
data.
Although
this
approach
promises
a
number
of
benefits,
it
also
leads
to
tensions
with
Indigenous
data
sovereignty
movements
led
by
peoples
around
the
world
who
are
asserting
control
over
use
as
part
self-determination.
has
role
in
improving
access
services
and
delivering
improved
outcomes
for
communities.
However,
we
argue
that
order
be
effective
ethical,
essential
field
engages
more
peoples´
rights
interests.
We
discuss
challenges
possible
improvements
acquisition,
management,
analysis,
integration
they
pertain
communities
world.
The Lancet Digital Health,
Journal Year:
2023,
Volume and Issue:
6(1), P. e6 - e8
Published: Nov. 16, 2023
A
central
question
in
developing
artificial
intelligence
(AI)
for
the
interpretation
of
medical
images
is
whether
these
algorithms
will
work
safely
and
effectively
across
diverse
patient
populations
clinical
settings.1Rajpurkar
P
Lungren
MP
The
current
future
state
AI
images.N
Engl
J
Med.
2023;
388:
1981-1990Crossref
PubMed
Scopus
(22)
Google
Scholar
Public
datasets
are
basis
training
validating
models,
making
them
essential
rigorous
assessment
performance
reliability
that
required
by
regulatory
bodies
such
as
US
Food
Drug
Administration.2Seastedt
KP
Schwab
O'Brien
Z
et
al.Global
healthcare
fairness:
we
should
be
sharing
more,
not
less,
data.PLOS
Digit
Health.
2022;
1e0000102Crossref
Scholar,
3Wu
E
Wu
K
Daneshjou
R
Ouyang
D
Ho
DE
Zou
How
devices
evaluated:
limitations
recommendations
from
an
analysis
FDA
approvals.Nat
2021;
27:
582-584Crossref
(166)
However,
public
seldom
have
diversity
to
adequately
evaluate
algorithmic
generalisability.4Kaushal
Altman
Langlotz
C
Geographic
distribution
cohorts
used
train
deep
learning
algorithms.JAMA.
2020;
324:
1212-1213Crossref
(97)
More
comprehensive
varied
would
improve
models
their
ability
generalise
demographics,
environments,
imaging
equipment,
geographical
regions.
scarcity
data
also
impedes
optimal
deployment
strategies
specific
settings.
For
example,
there
undergo
so-called
site-specific
fine-tuning,
which
refers
process
further
a
pre-trained
model
on
local
target
site.
This
additional
can
help
avoid
decreased
could
result
differences
population
between
original
site
before
approval
new
hospitals.
issue
has
broad
implications
immediate
care
regulation.
Comprehensive
evaluations
needed
inform
guidelines
regarding
dataset
composition
validation
requirements
regional
adaptation.5Glocker
B
Robinson
Castro
DC
Dou
Q
Konukoglu
Machine
with
multi-site
data:
empirical
study
impact
scanner
effects.arXiv.
2019;
(published
online
Oct
10)
(preprint).https://doi.org/10.48550/arXiv.1910.04597Google
Here,
introduce
Medical
Data
All
(MAIDA)
initiative,
pioneering
framework
global
medical-imaging
address
shortage
health
enable
evaluation
all
populations.
Similar
its
Hindi
namesake
flour,
MAIDA
aims
provide
key
ingredients
thoroughly
assess
through
rich,
datasets.
initiative
development
coordinating
partners
while
remaining
locally
adaptable
curate
comprehensive,
representative
collaborative
effort
assembling
at
scale
assessments
collaboratively
engaged
range
hospitals
worldwide
release
focused
but
dataset.
Our
collection
strategy
was
acquire
100
scans
per
setting,
number
balance
obtaining
sample
each
institution
managing
logistical
considerations.
size
enabled
us
test
robustness
our
shifts.
outreach,
individual
researchers
radiology
departments
worldwide.
Furthermore,
attracted
interest
individuals
who
learnt
about
various
ways,
including
website,
social
media,
or
conference
presentations.
We
refer
individuals,
whom
directly
collaborate
institutions,
champions.
Although
most
participants
were
doctors,
welcomed
computer
scientists
primarily
affiliated
large
academic
centres.
discovered
knowledge
invaluable
maintaining
quality.
To
project
goals,
conducted
30-min
meetings
outlined
offered
standard
templates
institutional
review
boards
(IRBs)
transfer
use
agreements
(DTUAs)
simplify
compliance
(figure).
Despite
efforts,
protocols
differed
among
institutions.
Federal
Demonstration
Partnership
(FDP)
template
standardise
sharing.
Challenges
emerged,
institutions
unwilling
publicly
share
modifications
DTUAs,
resulted
delays.
Local
champions
organisations
often
pivotal
advancing
process.
majority
accepted
templates,
taught
flexible
transparent
communication
consider
timelines
data-sharing
preferences.
provided
de-identification.
documentation
delineated
detailed
inclusion
exclusion
criteria
manual
downloading
data-recording
worksheets,
randomising
selections,
collecting
samples
met
stipulations.
guidelines,
fully
written
documentation.
this
issue,
detail.
practices
meaning
universally
applicable.
countries
other
than
USA
rarely
collect
race
patients,
some
chest
x-rays
patients
indiscriminately,
reports
might
absent
settings.6Pinto
AD
Eissa
Kiran
T
Mashford-Pringle
Needham
Dhalla
I
Considerations
Indigenous
identity
during
card
renewal
Canadian
jurisdictions.CMAJ.
195:
E880-E882Crossref
(0)
7Burute
N
Jankharia
Teleradiology:
Indian
perspective.Indian
Radiol
Imaging.
2009;
19:
16-18Crossref
Early
detection
issues
allowed
adapt
solutions
cases
instructional
meetings.
mitigate
risk
exposure
protected
information
(PHI)
transmission,
complete
de-identification
adapted
different
types.
structured
data,
worksheets
designed
omit
variables
classified
PHI
instructed
modify
any
potentially
identifying
data.
free-form
reports,
asked
manually
remove
identifiers,
names
dates.
images,
specified
displaying
jaws
teeth,
partial
skulls,
jewellery.
developed
tool
enhance
digital
communications
medicine
(DICOM)
files,
commonly
contain
extensive
metadata—some
PHI.
preclude
inadvertent
disclosure
PHI,
extracted
pixel
values
non-PHI
metadata
saved
separately
PNG
CSV
files.
Partners
only
shared
files
metadata,
thereby
eliminating
embedded
DICOM
metadata.
permitted
hospital
security
teams
both
content
operational
logic
via
Python
scripts,
if
required.
Before
sharing,
in-person
partner
validate
correct
execution
data-collection
data-de-identification
procedures.
Upon
receipt
meticulous
research
team
confirm
absence
identifiers
completeness
Substantial
time
invested
liaising
partners.
efforts
streamline
offering
IRB
DTUA
well
limiting
requests
records
timeframe
completion
several
months.
Most
delays
attributable
waiting
approvals
signatures,
especially
monthly
ethics-committee
complex
legal-review
mechanisms.
According
feedback
multiple
partners,
actual
tasks
typically
accomplished
within
1
week.
Chest
widely
radiological
tests
worldwide,
yet
prone
error.8Gefter
WB
Post
BA
Hatabu
H
Commonly
missed
findings
radiographs:
causes
consequences.Chest.
163:
650-661Summary
Full
Text
PDF
substantial
focus
research,
generalisability
existing
settings
remains
insufficiently
evaluated
insufficient
size,
diversity,
scope
reliable
annotations
(appendix).
quality
breadth
three
settings:
intensive
unit
(ICU),
neonatal
ICU,
emergency
department.
In
adult
focuses
automating
endotracheal-tube
frequent
misplacements
severe
complications.
precise
placements,
considering
minimal
error
margin
vulnerable
group.
department,
targets
quick
consistent
pneumonia
machine
efficiency
collaborations
clinicians
AI.9Agarwal
Moehring
Rajpurkar
Salz
Combining
human
expertise
intelligence:
experimental
evidence
radiology.https://www.nber.org/system/files/working_papers/w31422/w31422.pdfDate:
2023Date
accessed:
November
9,
2023Google
assemble
dataset,
collects
includes
reason
x-ray,
available
demographic
details
(eg,
age,
race,
sex).
nuanced
understanding,
clinically
relevant
vital
signs
specialised
results,
included
available.
Through
plan
progressively
been
collected
regions
environments.
first
expected
early
2024,
partnerships
expand.
aim
make
open
into
assessing
improving
imaging.
On
insights
gained
suggest
advance.
Engaging
legal
administrative
processes.
Anticipating
adequate
secure
finalise
contracts
prudent,
processes
require
time.
Maintaining
delineates
emphasises
removal
promote
consistency
minimising
potential
confounders
subsequent
analyses.
recognising
vary
being
when
applying
prove
beneficial.
Thus,
proactively
working
unique
challenges
advisable.
Direct
interactions
useful
questions
show
proper
techniques,
less
acquainted
complexities
declare
no
competing
interests.
thank
Wendy
Erselius
(Department
Biomedical
Informatics,
Harvard
School,
University,
Boston,
MA,
USA)
instrumental
role
logistics
establish
coalition
initiative.
Cassandra
Perry
Jennifer
Sullivan
helping
develop
dedicated
partnering
datasets,
benefit
people
Download
.pdf
(.15
MB)
Help
pdf
Supplementary
appendix
PLOS Digital Health,
Journal Year:
2023,
Volume and Issue:
2(7), P. e0000298 - e0000298
Published: July 6, 2023
Real-world
data
(RWD)
bears
great
promises
to
improve
the
quality
of
care.
However,
specific
infrastructures
and
methodologies
are
required
derive
robust
knowledge
brings
innovations
patient.
Drawing
upon
national
case
study
32
French
regional
university
hospitals
governance,
we
highlight
key
aspects
modern
clinical
warehouses
(CDWs):
transparency,
types
data,
reuse,
technical
tools,
documentation,
control
processes.
Semi-structured
interviews
as
well
a
review
reported
studies
on
CDWs
were
conducted
in
semi-structured
manner
from
March
November
2022.
Out
France,
14
have
CDW
production,
5
experimenting,
prospective
project,
8
did
not
any
project
at
time
writing.
The
implementation
France
dates
2011
accelerated
late
2020.
From
this
study,
draw
some
general
guidelines
for
CDWs.
actual
orientation
towards
research
requires
efforts
governance
stabilization,
standardization
schema,
development
documentation.
Particular
attention
must
be
paid
sustainability
warehouse
teams
multilevel
governance.
transparency
tools
transformation
allow
successful
multicentric
reuses
routine
International Journal of Health Governance,
Journal Year:
2023,
Volume and Issue:
28(3), P. 225 - 237
Published: March 7, 2023
Purpose
This
paper
introduces
a
new
set
of
equity
and
rights-based
principles
for
health
data
governance
(HDG)
makes
the
case
their
adoption
into
global,
regional
national
policy
practice.
Design/methodology/approach
discusses
need
unified
approach
to
HDG
that
maximises
value
whole
populations.
It
describes
unique
process
employed
develop
principles.
The
highlights
lessons
learned
from
principle
development
proposes
steps
incorporate
them
policies
Findings
More
than
200
individuals
130
organisations
contributed
principles,
which
are
clustered
around
three
interconnected
objectives
protecting
people,
promoting
prioritising
equity.
build
on
existing
norms
guidelines
by
bringing
human
rights
lens
HDG.
Practical
implications
offer
strong
vision
reaps
public
good
benefits
whilst
safeguarding
individual
rights.
They
can
be
used
governments
other
actors
as
guide
equitable
collection
use
data.
inclusive
model
replicated
strengthen
future
approaches.
Originality/value
article
first
bottom-up
effort
Data & Policy,
Journal Year:
2023,
Volume and Issue:
5
Published: Jan. 1, 2023
Abstract
A
proliferation
of
data-generating
devices,
sensors,
and
applications
has
led
to
unprecedented
amounts
digital
data.
We
live
in
an
era
datafication,
one
which
life
is
increasingly
quantified
transformed
into
intelligence
for
private
or
public
benefit.
When
used
responsibly,
this
offers
new
opportunities
good.
The
potential
data
evident
the
possibilities
offered
by
open
collaboratives—both
instances
how
wider
access
can
lead
positive
often
dramatic
social
transformation.
However,
three
key
forms
asymmetry
currently
limit
potential,
especially
already
vulnerable
marginalized
groups:
asymmetries,
information
agency
asymmetries.
These
asymmetries
human
both
a
practical
psychological
sense,
leading
feelings
disempowerment
eroding
trust
technology.
Existing
methods
(such
as
consent)
well
some
alternatives
under
consideration
(data
ownership,
collective
personal
management
systems)
have
limitations
adequately
address
challenges
at
hand.
principle
practice
self-determination
(DSD)
therefore
required.
study
DSD
remain
its
infancy.
characteristics
we
outlined
here
are
only
exploratory,
much
work
remains
be
done
so
better
understand
what
works
does
not.
suggest
need
research
framework
agenda
explore
it
imbalances,
inequalities—both
society
more
generally—that
emerging
policy
our
era.
PLOS Global Public Health,
Journal Year:
2023,
Volume and Issue:
3(8), P. e0002252 - e0002252
Published: Aug. 14, 2023
Current
methods
to
evaluate
a
journal's
impact
rely
on
the
downstream
citation
mapping
used
generate
Impact
Factor.
This
approach
is
fragile
metric
prone
being
skewed
by
outlier
values
and
does
not
speak
researcher's
contribution
furthering
health
outcomes
for
all
populations.
Therefore,
we
propose
implementation
of
Diversity
Factor
fulfill
this
need
supplement
current
metrics.
It
composed
four
key
elements:
dataset
properties,
author
country,
gender
departmental
affiliation.
Due
significance
each
individual
element,
they
should
be
assessed
independently
other
as
opposed
combined
into
simplified
score
optimized.
Herein,
discuss
necessity
such
metrics,
provide
framework
build
upon,
landscape
through
lens
element
publish
findings
freely
available
website
that
enables
further
evaluation.
The
OpenAlex
database
was
extract
metadata
papers
published
from
2000
until
August
2022,
Natural
language
processing
identify
elements.
Features
were
then
displayed
individually
static
dashboard
developed
using
TableauPublic,
which
at
www.equitablescience.com.
In
total,
130,721
identified
7,462
journals
where
significant
underrepresentation
LMIC
Female
authors
demonstrated.
These
are
pervasive
show
no
positive
correlation
with
Journal's
systematic
collection
concept
would
allow
more
detailed
analysis,
highlight
gaps
in
knowledge,
reflect
confidence
translation
related
research.
Conversion
an
active
pipeline
account
fact
how
define
those
most
risk
will
change
over
time
quantify
responses
particular
initiatives.
continuous
measurement
across
groups
investigating
never
lose
importance.
Moving
forward,
encourage
revision
improvement
diverse
order
better
refine
concept.