QUESTIONNAIRE
on a minimum dataset for patient summaries
being exchanged across borders
This questionnaire is part of an anonymous survey launched by the EU project
“eHealth Governance Initiative” (eHGI):
This project aims to establish a political platform for EU Member States in order to drive their
national political agendas on eHealth and hence ensure quality, continuity, safety and
efficiency of healthcare provided with the support of ICT. One of the priorities being
tackled by the eHGI is to define a non-exhaustive list of data to be included in the patient
summary and which can be shared between health professionals across borders. This task is
defined in Art. 14 of the Directive 2011/24/EU on the patient rights in cross-border healthcare
and is handled by the eHGI.
Minimum dataset for patient summaries
In order to define such a minimum dataset being used across borders a group of health
professionals has worked out a first solution that has been communicated under the
epSOS project as the “epSOS minimum dataset” which is introduced in the course of this
questionnaire.
Benefit for health professionals:
 Access to a minimum set of coded data which shall be used in every European Member
State for the safe management of mainly unplanned treatment
 Dataset will be translated from the patient’s language to the doctor’s language
 Support onsite treatment of patients coming from abroad
 Support post-treatment when the patient is back at home
Why fill it in?
 Collect views and expectations from health professionals on the dataset developed by
epSOS before it shall be submitted as final proposal to the political high level
 Opportunity for health professionals to provide input when it comes to the definition on the
minimum data required
 Based on the major feedback received, adaptation of the given dataset so as to meet
expectations of health professionals
 Defined minimum dataset may be given either in primary (GP) or secondary
(hospital or specialist) care
The evaluation will be done anonymously!
Please FILL IN the Questionnaire and RETURN it to: ehgi@ehealth.gv.at
1) In general when you think about your daily business, is your attitude towards
the contribution that eHealth can make to good patient care…
Very positive
Very negative
In case boxes do
not work, please
enter below the
number you want
to select:
2) Evaluation of a first solution of a minimum dataset for a patient summary
as developed by epSOS:
Imagine, that the minimum dataset given below can be created by a health professional
(eg. GP, family doctor) and stored in the patient’s home country. When travelling abroad
the patient is seeking a health professional due to unexpected health problems:
 You, as treating health professional, could access the patient’s dataset
 The dataset being translated automatically from the patient’s language to your own
language with Codes (eg. ICD-10, Snomed CT, etc.)
Please take a look at the below given minimum dataset from epSOS and answer
the subsequent questions:
PATIENT DATA
MAIN DATA
CATEGORY
SUB-CATEGORY
1.
Identification
National Health Care
patient ID
National Health Care patient ID
2. Personal
Information
2.1 Full Name
2.2 Date of Birth
2.3 Gender
3. Contact
Information
Given name
Family name/Surname
Date of Birth
Gender Code
Name of the Healthcare Provider/Legal organization
Preferred Healthcare
Provider / Legal
Telephone No
organization to contact E-mail
PATIENT CLINICAL DATA
MAIN DATA
4. Alerts
5. Medical
Problems
CATEGORY
SUB-CATEGORY
Allergy description:
Referring to the clinical manifestation of the allergy reaction
Allergies and
Allergy description id code
intolerances
Agent that is responsible for the adverse reaction
Agent Id code
Problem/diagnosis description:
Referring to conditions that may have a chronic or relapsing
course, conditions for which the patient receives repeat
5.1 List of Current
medications and conditions that are persistent and serious
Problems/Diagnosis
contraindications for classes of medication.
Problem Id (code)
Onset time including date of problem onset
Device and implant Description:
Referring to the patient’s implanted and external medical devices
5.2 Medical Devices and
and equipment that their health status depends on.
implants
Device Id code
Implant date
Procedure description
5.3 Major Surgical
Procedures in the past 6 Procedure Id (code)
months
Procedure date
List of current
medicines
6.
Medication
Summary
Active ingredient:
Substance that alone or in combination with one or more
other ingredients produces the intended activity of a
medicinal product.
(All prescribed
medicine whose
Active ingredient id code
period of time
Strength, eg: 500 mg per tablet
indicated for the
Number of units per intake, eg: 1 tablet
treatment has not yet Frequency of intakes, eg: each 24 hours
expired whether it has Duration of treatment, eg: 14 days
been dispensed or
Date of onset of treatment
not)
INFORMATION ABOUT PATIENT SUMMARY
MAIN DATA
CATEGORY
SUB-CATEGORY
7. Country
Country
Country where patient summary was created
8. Patient
Summary
8.1 Date Created
8.2 Date of Last
Update
Date Created
9. Author /
Nature of the
patient
summary
Author of the patient
summary
10. Legal
Entity
Responsible of the
patient summary data
Date of Last Update
Author of the patient summary:
Highlight if the data is collected manually by an healthcare
professional or is collected automatically from different sources
(eg: hospital doctor repository, General Practitioner, etc) through
predetermine clinical rules.
Responsible of the patient summary data:
At least an author organisation shall be listed. In case there is no
healthcare provider identified at least a healthcare professional
shall be listed.
2a) Do you think that the given epSOS minimum dataset is adequate for the purpose
of providing information on the most important/necessary clinical and In case boxes do
not work, please
administrative facts about an unknown patient coming from abroad?
enter below the
number you want
to select:
Yes, absolutely
Not at all
2b) Do you think that the given epSOS minimum dataset would assist you in
providing better and more efficient medical treatment to a foreign patient
previously unknown to you?
Yes, absolutely
Not at all
2c) Would you be willing to use the given epSOS minimum dataset in practice
(provided that there is a technically secure, efficient and user-friendly infrastructure
available)?
Yes, absolutely
Not at all
2d) Do you think that, the given epSOS minimum dataset provides information that
should not be part of the minimum dataset?
(Please select the number of the respective category/ies):
MAIN DATA:
CATEGORY:
1 Identification
2 Personal Information
4 Alerts
5 Medical Problems
7 Country
8 Patient Summary
9 Author/Nature of the Patient Summary
3 Contact Information
6 Medication Summary
10 Legal Entity
2.1 Full name
2.2 Date of birth
2.3 Gender
5.1 List of current problems/diagnosis
5.2 Medical devices and implants
5.3 Major surgical procedures in the past 6 months
8.1 Date created
8.2 Date of last update
No
3) Opportunity to adapt the given epSOS dataset:
Modification with additional information
In case you did evaluate all questions from section 2) with 1 or 2, please continue
with question 4).
3a) Is there additional data you would expect being part of the most essential
clinical and administrative information in a minimum dataset of a patient
summary? (Please select a maximum of 8 CATEGORIES in the field provided):
PATIENT DATA
MAIN DATA
CATEGORY
SUB-CATEGORY
Street
Number of Street
City
Post Code
State or Province
Address
Contact
Information
Telephone No
E-mail
Legal guardian /
Contact Person
(if available)
Country
Telephone No
E-mail
Role of that person (legal guardian or contact
person)
Given name
Family name/Surname
Telephone No
E-mail
Insurance
Information
Insurance Number1
Insurance Number
PATIENT CLINICAL DATA
Pending decision by epSOS of incl. it in basic dataset (in some countries “Insurance Number” is needed for
univocal identification of the patient).
1
select
MAIN DATA
Alerts
CATEGORY
Allergies and intolerances
Vaccinations
History of Past
Illness
SUB-CATEGORY
select
Onset Date (Date of the observation of the
reaction)
Vaccinations (Contains each disease against
which immunization was given)
Brand name
Vaccinations id code
Vaccination Date
Problem Description:
Problems or diagnosis not included under the
definition of “Current problems or diagnosis”
Problem Id (code)
List of Resolved, Closed or
On set time
Inactive problems
End date
Resolution Circumstances:
Describes the reasons by which the problem
changed the status from current to inactive.
Procedure description
Surgical Procedures prior to
Procedure Id (code)
the past six months
Procedure date
Treatment
Recommendations
Medical
Problems
Autonomy/Invalidity
Recommendations Description (Therapeutic
recommendations that do not include drugs)
Recommendation Id (code)
Description (Need of the patient to be
continuously assisted by third parties)
Invalidity Id code
Medication
Summary
List of current medicines
Social History
Social History Observations related to: smoke,
Social History Observations alcohol and diet
Reference date range
Pharmaceutical dose form
Pregnancy History Expected date of delivery
Expected date of delivery
Physical Findings
Blood pressure (including systolic and diastolic
blood pressure)
Vital Signs Observations
Date when blood pressure was measured
Diagnostic Tests
Blood group
Result of blood group
Date in which the blood group test was done
Others (Should you have further data you want to add, please specify them below):
3b) In case you did evaluate question 2c) with 3, 4, 5 or 6 would you be willing to use
the given epSOS minimum dataset in practice, provided that it can still be
adapted (eg. by including the relevant data you selected in question 3a)?
Yes, absolutely
Not at all
4) General data (please select):
In case boxes do not work,
please use the boxes on
this side:
4a) Gender:
4b) Are you replying on behalf of an organization?
Please specify:
4c) Age:
4d) Select your Country:
A-I: Please select a country.
J-Z: Please select a country.
4e) Profession:
General Practitioner (GP)
Practitioner in the function of emergency doctor (e.g. in urgent care centers, first
aid centres, accident & emergency departments, etc.)
Other specialty, please specify:
4f) Place of profession:
Hospital
Doctor’s surgery
Other location, please specify:
Comments:
Please add any additional comments or suggestions you may have here:
Please return the filled in questionnaire by email to:
ehgi@ehealth.gv.at
THANK YOU FOR YOUR SUPPORT!!
For more information please visit:
www.epsos.eu
www.ehgi.eu