The Need for an International Medical Emergency Dataset
Judith Born, Jan Wohlmann and Christian Juhra
Office for eHealth, University Hospital Muenster, Germany
Keywords: Medical Emergency Dataset, epSOS, JAseHN.
Abstract: A significant number of problems in emergency care are caused by a lack of provider access to pre-existing
patient information at the point of care. A particular difficulty is the access to information on the medical
history of patients from other countries. This is due to a number of reasons such as language barriers,
technical and safety hurdles, differences in expectations concerning content of the data and workflow
differences between emergency room departments. With increasing numbers of travellers, a cross-national
information exchange of relevant medical data in case of emergency is becoming more and more important.
Therefore, this paper aims to discuss possibilities and requirements for setting up an internationally
available emergency data set.
1 INTRODUCTION
Pre-existing medical information about patients is
critical to first responders and physicians in
delivering emergency services (Born, 2016).
Unfortunately, this vital data is often unavailable to
providers due to language or geographical barriers,
or due to patient incapacitation (Shapiro, 2007). This
is even more important for patients who need to be
treated in another country. The number of airplane
passengers in 2018 exceeded 4 billion and is
expected to double by 2036 (IATA, 2019). With
increasing numbers of travellers, the number of
patients that need to be treated abroad will also rise.
In order to treat medical emergencies effectively
and efficiently, the attending emergency physician
must have certain background information about the
patient, such as prior or acute diagnosis, medications,
allergies, implants, etc.
Even when prior medical records are available in
a specific country, they can be hard to access in a
timely fashion and may have incomplete or difficult
to interpret data (Shapiro, 2007). Some countries
have implemented electronic medical records
(EMRs) to improve accessibility of medical records
to care providers. Yet, these records are
uncommonly organized to provide the most essential
information about the patients to be rapidly
accessible to health providers in emergencies to
guide optimal care.
Even if such emergency electronic datasets exist
in one country, these data commonly cannot be
accessed by an emergency physician in another
country. Thus vital information can only be retrieved
by laborious efforts (e.g. calling the physician in the
home country) or not at all.
This position paper adresses the important
questions why it is still not possible to access vital
information in medical emergencies for international
patients and what actions should be undertaken to
resolve this issue.
2 PREREQUISITES FOR DATA
EXCHANGE AND CURRENT
STATUS
If medical data should be accessible and usable in
case of an emergency in a foreign country, based in
the experiences of the authors the following
prerequisites must at least be met:
1. The data must valid, ie. it needs to be
generated by a physician or other healthcare
professionals.
2. The data must be stored electronically.
3. The data must be stored in a standardized
format.
4. The data must be accessible in a secure way.
5. The data must be understandable for a foreign
physician.
262
Born, J., Wohlmann, J. and Juhra, C.
The Need for an International Medical Emergency Dataset.
DOI: 10.5220/0007744402620266
In Proceedings of the 5th International Conference on Information and Communication Technologies for Ageing Well and e-Health (ICT4AWE 2019), pages 262-266
ISBN: 978-989-758-368-1
Copyright
c
2019 by SCITEPRESS Science and Technology Publications, Lda. All rights reserved
2.1 Electronic Medical Records in
European Countries
In 2016 we conducted an internet research to
identify current activities in deploying emergency
datasets in European countries (all 28 Member
States of the European Union as well as for Norway,
Switzerland, Macedonia, Montenegro, Serbia,
Albania, Bosnia and Herzegovina). The research
was undertaken in English and German and
excluded commercial approaches (such as medical
emergency datasets included in the operating system
of smartphones). The following table 1 shows all the
initiatives that could be identified in this search. Due
to the limitation of the search to German and
English, the presented results do not claim to be
complete.
Table 1: Emergency Datasets / EMRs Initiatives in
Europe.
Country Initiative
Germany Emergency Dataset for the
German Electronic Health Card
Switzerland Emergency Medical Data for the
Insurance Card
Austria Emergency data for the Austrian
electronic health records (ELGA)
England Summary Care Record
Scotland Emergency Care Summary
Northern Ireland Emergency Care Summary
Record
Wales Individual Health Record
Norway National Summary Care Record
Sweden National Patient Overview
(Nationell Patientöversikt)
Slovakia Patient Summary (pacientsky
sumar)
Spain Patient Summaries (Historia
Clínica Resumida)
Finland National Patient Summary
Belgium Summary Electronic Health
Record (SumEHR)
France Medical Component Summary
(Volet Médical de Synthèse)
Despite the various activities in different countries to
implement an EMR, an international exchange of
medical data will only be possible if a standardized
data format exists.
2.2 Standardization / Data Exchange
In order to facilitate medical data exchange across
Europe, the epSOS (European Patients Smart Open
Services)-project was initiated in 2008. Its goal was
to develop a practical eHealth framework and ICT
infrastructure (based on existing national
infrastructures) that will enable secure access to
patient health information, particularly with respect
to a basic patient summary and ePrescription,
between European health care systems. The epSOS
Consortium was composed of about 50 beneficiaries
from 25 states, industry teams, as well as observers
(including Bulgaria, Iceland, Lithuania, Serbia).
In order to provide the Health Care Professional
(HCP) with a dataset of key health information at the
point of care to deliver safe patient care during
unscheduled care and planned care – having its
maximal impact in the unscheduled care – the
electronic Patient Summary was developed in
epSOS.
A great achievement of the project was an
identification of the most serious problems that
currently impede cross-border transfer of patient
data in an electronic form: the differences in national
laws and semantic interoperability. For more
information on the epSOS-project, which ended in
2014, please refer to (epSOS, 2014)
One of the follow-up projects of epSOS was the
JAseHN (Joint Action to support the eHealth
Network) project, which aimed to Develop political
recommendations and other instruments for
cooperation in four different areas:
1. interoperability and standardization
2. monitoring and assessment of
implementation
3. exchange of knowledge and
4. global cooperation and positioning
During JAseHN, a report on Patient Summary
guidelines’ implementation was created based on the
answers of representatives of 28 Countries,
responsible for the implementation of these
guidelines. According to JAseHN 13 out of these
countries had no National Contact Points (NCPs) for
the purpose of ensuring interoperability across
national borders with other Member States. Seven
countries had such NCPs, but they did not operate as
suggested by the Patient Summery Guidelines. Only
four countries had an NCP which role was set up
and operated as suggested by these guidelines. So
more than 10 years after the start of epSOS, most
European countries still do not have an NCP and the
needed infrastructure to support interoperability
across borders.
Asked for the reasons for this, the countries
answered:
Other, more urgent, eHealth priorities (15)
Other, more urgent, healthcare priorities
(12)
The Need for an International Medical Emergency Dataset
263
Organizational hurdles (12)
Lack of data completeness (7)
Technical hurdles (7)
Lack of a clear national business case for
implementing the Patient Summary
guidelines (6)
Lack of a clear financing procedure (6)
Difficulty in changing current legal model
(5)
Low data quality (5)
Lack of clinical acceptability of the Patient
Summary guidelines (5)
Lack of national sponsorship (4)
Resistance and criticism from national
stakeholders (4)
Unclear or scattered responsibility (4)
Burdensome existing IT systems (3)
Reconcilability of professional
terminologies is not possible (2)
Nothing from the above (1)
There were no problems faced.
Implementation went without noticeable
issues (1)
So for most countries, international exchange of
medical data was not a priority and thus - so far - not
implemented.
For more information on JAseHN, please refer to
(JAseHN, 2019)
2.3 Accessibility and Security
Even if a national EMR is able to export medical
data in a standardized way such as the epSOS
Patient Summary, the data must still be accessible by
international physicians. While within a national
context, the accessibility of medical data can be
restricted to registered health professionals, there is
no way to ensure this on an international level. In
addition, the patient can be unconscious and not able
to provide access to his data by entering a secure
code.
This dilemma between accessibility and security
cannot be solved easily. Data could be accessed
using QR-codes, which at least allows an
international physician to view the data or even
import it into his own information system. These
QR-codes must be easy to find by an emergency
physician should the patient be unconscious. For
example, it could be printed and stuck to the health
insurance card. However, using only a QR-code
would provide access to anyone who gets hold of
this code. This could of course be wanted by the
patient, but a second layer of security would strongly
be recommended.
2.4 Understandability
Working with international patients, speech barriers
will often arise. How would a French emergency
physician be able to understand a Swedish
Emergency Dataset? Since the European Union has
24 official languages, even in the EU it will be
difficult to ensure that each Emergency Dataset will
be understood by each emergency physician.
The use of codes such as ICD-10 will also not
solve this problem, since the evaluation of the
German Medical Emergency Dataset showed that
more medical information was included in the text
field than in the according ICD-10-GM codes (Born,
2015). The use of SNOMED CT might help solving
this issue. SNOMED CT is a comprehensive,
multilingual clinical healthcare terminology with
scientifically validated content and the aim to enable
consistent representation of clinical content in
electronic health records. Furthermore it is mapped
to other international standards. For more
information on SNOMED CT, please refer to
(SNOMED International 2019).
However, not all countries do have a nation-wide
SNOMED CT license.
3 SOLUTIONS
While European Patient Summary Guidelines do
exist, only a small portion of the EU member
countries are able to provide such a summary. An
even greater issue is the accessibility of these
datasets in an international context. The T.I.M.E.
(Timely Information Exchange in Medical
Emergency) project consortium led by the
University-Hospital Muenster has implemented a
prototype to show how an international data
exchange could be made possible. (TIME, 2019)
3.1 Electronic Medical Records
One prerequisite is the availability of medical data in
an electronic format. The T.I.M.E.-project used the
German Medical Emergency Dataset (MED), which
will be implemented in Germany in 2019. However,
in theory each national Emergency Dataset could be
used.
The data was stored in a personal electronic
patient record (EPR) which could be accessed
online. This was necessary since the MED is only
stored locally on the German electronic health card,
which cannot be read outside of Germany.
ICT4AWE 2019 - 5th International Conference on Information and Communication Technologies for Ageing Well and e-Health
264
3.2 Standardization / Data Exchange
While a European Patient Summary does exist, not
all countries follow the according guidelines. From a
user perspective, rather than the data format, the data
content is important. When a physician accesses an
international patient emergency dataset, how can he
be sure, that this dataset is in accordance to the
European Guidelines and created by a healthcare
professional? This becomes even more important
with the occurrence of commercial emergency
datasets, such as the dataset included in the Apple
iOS Health App.
One possibility to solve this issue would be the
certification of emergency datasets. Besides the
completeness of the data items, an important point is
the creation of such a dataset by a medical
professional. If such a certification would exist, each
international physician would be able to see if the
dataset he faces was created according to given
standards. These standards could also be created by
an international medical association such as the
European Society for Emergency Medicine or the
International Federation for Emergency Medicine.
3.3 Accessibility and Security
In order to access the emergency data of an
international patient, the attending physician must
have some key. This key could be a QR-code with a
time-limited validity which provides a link to the
centrally stored emergency data. As already
mentioned, such a single key could be used by
anyone who has access to it while the key is valid. If
this is not wanted by the patient, a second factor of
authentication could be used. This could be for
example a code that could be entered by an
accompanying person. Another possibility –
especially since an accompanying person will not
always be available in an emergency – would be a
second authentication that must be entered by a
medical call centre in the home country after it has
assured that the inquiring person is a healthcare
professional treating the patient. These call centres
could be provided by travel insurance companies.
3.4 Understandability
Since it will not be possible to create a medical
emergency dataset which can be understood by any
international physician, a translation of this dataset
may be necessary. Such translation services do
already exist for international patients and can offer
a fast translation of the data when needed.
It seems doubtful that the usage of coding systems
such as SNOMED will solve the natural language
problem. We analysed the emergency datasets of 64
patients which included 476 diagnoses. 18.5% of
these diagnoses were not coded (ICD-10) at all, from
the remaining coded diagnoses, the ICD-10 coded
included less or different information compared to
the free text information in 19.8% of all coded
diagnoses. Thus – relying only on ICD-10 – in
34.6% of all documented diagnoses information was
missing. (Juhra 2015)
4 CONCLUSIONS
Despite the current barriers, it is possible to
exchange medical emergency data across borders.
However, these data must exist in an electronic
format in the home country. With an increasing
number of tourists, the number of medical
emergencies will rise in this group and a cross-
national information exchange of relevant medical
data in case of emergency will become more and
more important.
So far, the discussion about medical emergency
datasets has a very strong technical focus. With
already existing guidelines, national implementa-
tions and technology, it is time that two countries
start the exchange of medical emergency data and
help others learn from their experiences, not only
from the technical, but also from the medical ones.
The authors strongly suggest to shift the focus of
the discussion away from a technical perspective and
to concentrate more on the users, the patients and
healthcare professionals who will benefit in the end.
ACKNOWLEDGEMENTS
The T.I.M.E. project was funded by the European
Union and the Ministry of Labor, Health and Social
Affairs (MAGS) of North-Rhine Westphalia as part
of the EFRE.NRW program.
REFERENCES
Born, J., Albert, J., Butz, N., Loos, S., Schenkel, J, Gipp,
C., Juhra, C., 2015. The Emergency Data Set for the
German Electronic Health Card - Which Benefits Can
Be Expected? Studies in Health Technology and
Informatics, 212, 206-10.
Born, J., Albert, J., Borycki, EM., Butz, N., Ho, K.,
Koczerginski, J., Kushniruk, AW., Schenkel, J., Juhra,
The Need for an International Medical Emergency Dataset
265
C., 2016. Emergency Data Management –
Overcoming (Information) Borders. Studies in Health
Technology and Informatics, 231, 18-22.
epSOS, 2014. Cross-border health project epSOS: What
has it achieved? (online) Available at:
https://ec.europa.eu/digital-single-
market/en/news/cross-border-health-project-epsos-
what-has-it-achieved (Accessed 15 Jan. 2019).
IATA, 2018. Industry Statistics Fact Sheet. (pdf)
Available at:
https://www.iata.org/pressroom/facts_figures/fact_she
ets/Documents/fact-sheet-industry-facts.pdf (Accessed
15 Jan. 2019)
JAseHN, 2019. JASEHN – Joint Action to Support the
eHealth Network. (online) Available at:
http://jasehn.eu/ (Accessed 15 Jan. 2019).
Juhra, C., Schenkel, J., Albert, J., Butz, N., Born, J., 2015.
In Case of Emergency – Are ICD-10 Codes Enough?
Studies in Health Technology and Informatics, 208,
195-199.
SNOMED International, 2019. 5-Step Briefing. (online)
Available at: http://www.snomed.org/snomed-ct/five-
step-briefing (Accessed 15 Jan. 2019).
Shapiro, J. S., Kannry, J., Kushniruk, A. W., Kuperman,
G., & The New York Clinical Information Exchange
(NYCLIX) Clinical Advisory Subcommittee, 2007.
Emergency Physicians’ Perceptions of Health
Information Exchange. Journal of the American
Medical Informatics Association, 14(6), 700-705.
Stiell, A., Forster, A. J., Stiell, I. G., & van Walraven, C.,
2003. Prevalence of information gaps in the
emergency department and the effect on patient
outcomes. Canadian Medical Association Journal,
169(10), 1023-1028.
TIME, 2019. Forschungsprojekte der Stabsstelle
Telemedizin - Telemedizinische Informationen bei
MEdizinischen Notfällen (T.I.M.E.). (online) Available
at: https://www.ukm.de/index.php?id=telemedizin-
forschung (Accessed 15 Jan. 2019).
ICT4AWE 2019 - 5th International Conference on Information and Communication Technologies for Ageing Well and e-Health
266