In this Issue HL7 News

A Digital Health Compass: My Data, My Decision, Our ePower • September 2016
(“ePower”) catalyzed by health
data standards and open APIs.
• Petra Wilson stressed the
importance of patients’ access
to their own data noting
that, now more than ever, we
should shift from discussing
ownership to custodianship
of data in recognition of the
value and power of multiple
contributors to one’s health
data. Personalization and
mobility can help if we
manage to integrate health
literacy interventions every
step of the way. According to
Petra, as patients we need a
new digital health compass
because navigating the
system is harder than ever
due to the scarcity of health
professionals and time needed
to engage in one’s health.
• Robert Stegwee discussed
personal health records
(PHRs) initiatives around
the globe. A personal health
record is more than a viewer
and organizer of personal
health information since it
provides treatment support,
including self-management
options, facilitates exchanges
of health information with
healthcare providers, and
supports healthy lifestyle
options and the tracking of
personal fitness. Despite its
value and potential, Robert
notes, “Not one PHR in 25
countries among six continents
has reached a million users
or more and the top barriers
according to a recent survey
include lack of leadership,
few provider incentives, and
non-use of standards for
information exchange.”
• Ed Hammond reviewed the
impact of FHIR, noting that
the compass is shifting the
focus from sick care to health,
from provider to patient, from
proprietary to shared, from
competition to collaboration,
from licensed to free, from
site specific to mobile, and
from national to global. He
highlighted the drivers for
HL7 FHIR, namely population
health, precision medicine,
data sharing, learning health,
big data, new media, mobile/
wearable devices, health
analytics, and translational
medicine. He also quoted
Dr. Karen DeSalvo, the U.S.
National Coordinator for
Health IT, saying that “The
challenge is how to bring that
information together to make
it usable and actionable for
everybody who wants it.“
• Christian Lovis stated that
although immense medical
knowledge is available, current
misinformed decisions may
affect our future health. He
encouraged the audience
to support strategies that
enable access to knowledge
and research that alleviate
health disparities, stating
At eHealthWeek in
Amsterdam, a panel
discusses various
eHealth initiatives
around the globe.
“Setting knowledge free! And
Making it matter for us!”
• Catherine Chronaki revisited
the theme of the session:
“My Data, My Decision, Our
ePower”. For the theme My
Data, she asked the audience
to imagine an app that knows
our health data and helps
us navigate a pharmacy
without opening the boxes
to review leaflets. The app
would compare and suggest
products for us, taking into
account our medication
history, allergies, and health
conditions. Catherine observed
that “there is much more to
a patient’s health data than a
doctor could ever know” and it
is our decision how to use this
data. With increased patient
focus, clinical trials involve
patients every step of the way,
from direct contact to actual
governance. It is our choice
whether we wish to donate
our data for the public good.
Interoperability standards help
us share knowledge, collect
high quality data and increase
our collective “ePower”.
Continued on page 27
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