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

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.

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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.

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