ETSI ES 202 642 V1.1.1 (2010-09)

Human Factors (HF); Personalization of eHealth systems by using eHealth user profiles (eHealth)

DES/HF-00108

Človeški dejavniki (HF) - Personalizacija sistemov e-zdravje z uporabo uporabniških profilov e-zdravje

Zagotavlja sredstvo za doseganje cilja v novem obdobju IKT, v katerem uporabniki lahko personalizirajo sisteme e-zdravja, da ustrezajo zahtevam in potrebam posameznega uporabnika v različnih situacijah.

General Information

• Status: Published
• Publication Date: 19-Sep-2010
• Technical Committee: HF - Human Factors
• Current Stage: 12 - Completion
• Due Date: 01-Oct-2010
• Completion Date: 20-Sep-2010
• Ref Project: SIST ES 202 642 V1.1.1:2011 - Human Factors (HF) - Personalization of eHealth systems by using eHealth user profiles (eHealth)

Standards Content (Sample)

SLOVENSKI STANDARD
SIST ES 202 642 V1.1.1:2011
01-junij-2011
ýORYHãNLGHMDYQLNL+)3HUVRQDOL]DFLMDVLVWHPRYH]GUDYMH]XSRUDER
XSRUDEQLãNLKSURILORYH]GUDYMH
Human Factors (HF) - Personalization of eHealth systems by using eHealth user profiles
(eHealth)
Ta slovenski standard je istoveten z: ES 202 642 Version 1.1.1
ICS:
35.240.80 Uporabniške rešitve IT v IT applications in health care
zdravstveni tehniki technology
SIST ES 202 642 V1.1.1:2011 en
2003-01.Slovenski inštitut za standardizacijo. Razmnoževanje celote ali delov tega standarda ni dovoljeno.

---------------------- Page: 1 ----------------------

SIST ES 202 642 V1.1.1:2011

---------------------- Page: 2 ----------------------

SIST ES 202 642 V1.1.1:2011

ETSI ES 202 642 V1.1.1 (2010-09)
ETSI Standard


Human Factors (HF);
Personalization of eHealth systems
by using eHealth user profiles (eHealth)

---------------------- Page: 3 ----------------------

SIST ES 202 642 V1.1.1:2011
 2 ETSI ES 202 642 V1.1.1 (2010-09)



Reference
DES/HF-00108
Keywords
health, HF, interface, MMI, user
ETSI
650 Route des Lucioles
F-06921 Sophia Antipolis Cedex - FRANCE

Tel.: [phone]  Fax: [phone]

Siret N° 348 623 562 00017 - NAF 742 C
Association à but non lucratif enregistrée à la
Sous-Préfecture de Grasse (06) N° 7803/88

Important notice
Individual copies of the present document can be downloaded from:
http://www.etsi.org
The present document may be made available in more than one electronic version or in print. In any case of existing or
perceived difference in contents between such versions, the reference version is the Portable Document Format (PDF).
In case of dispute, the reference shall be the printing on ETSI printers of the PDF version kept on a specific network drive
within ETSI Secretariat.
Users of the present document should be aware that the document may be subject to revision or change of status.
Information on the current status of this and other ETSI documents is available at
http://portal.etsi.org/tb/status/status.asp
If you find errors in the present document, please send your comment to one of the following services:
http://portal.etsi.org/chaircor/ETSI_support.asp
Copyright Notification
No part may be reproduced except as authorized by written permission.
The copyright and the foregoing restriction extend to reproduction in all media.

© European Telecommunications Standards Institute 2010.
All rights reserved.

TM TM TM TM
DECT , PLUGTESTS , UMTS , TIPHON , the TIPHON logo and the ETSI logo are Trade Marks of ETSI registered
for the benefit of its Members.
TM
3GPP is a Trade Mark of ETSI registered for the benefit of its Members and of the 3GPP Organizational Partners.
LTE™ is a Trade Mark of ETSI currently being registered
for the benefit of its Members and of the 3GPP Organizational Partners.
GSM® and the GSM logo are Trade Marks registered and owned by the GSM Association.
ETSI

---------------------- Page: 4 ----------------------

SIST ES 202 642 V1.1.1:2011
 3 ETSI ES 202 642 V1.1.1 (2010-09)
Contents
Intellectual Property Rights . 5
Foreword . 5
Introduction . 5
1 Scope . 7
2 References . 7
2.1 Normative references . 7
2.2 Informative references . 8
3 Definitions and abbreviations . 8
3.1 Definitions . 8
3.2 Abbreviations . 9
4 Overview of the personalization and profile concept . 10
4.1 Introduction . 10
4.2 What is a profile? . 10
4.3 Organization of the profile content . 11
4.4 Profile extensions . 12
4.4.1 Proprietary profile extensions . 12
4.4.2 Additional standardized information and preferences . 12
4.5 Templates . 12
4.6 Profiles and user views . 12
4.6.1 Situations, context and the scope object . 12
4.6.2 Avoiding conflicts by using templates . 13
4.7 Context information . 14
4.8 Generic profile architecture . 15
5 Model . 16
5.1 General user profile model . 16
5.2 Extensions to the model . 18
5.2.1 Introduction. 18
5.2.2 Services and device . 18
5.2.3 Reference to alternative definitions and classifications . 19
5.2.4 Further extensions to Profile-Item-Attributes class . 20
6 Stakeholders and their healthcare roles . 20
6.1 Stakeholders . 20
7 Profile management information and preferences . 22
7.1 Addressable entities and group . 22
7.2 Profile related information and preferences . 23
7.2.1 Priority levels . 23
7.3 Requirements for information sharing and privacy . 24
7.3.1 Privacy of information held in electronic health records . 24
7.3.2 Privacy of information stored in a user profile . 24
7.3.3 Information acquisition and sharing . 24
7.3.4 Validation of profile data items . 25
7.3.5 Accreditation of profile read/write access . 25
7.4 Sources . 25
7.5 Roles . 26
7.5.1 Profile system roles . 26
7.5.2 eHealth related roles and sharing of profile data . 27
8 Client related information . 29
8.1 Introduction . 29
8.2 Personal information . 29
8.3 Health information . 32
ETSI

---------------------- Page: 5 ----------------------

SIST ES 202 642 V1.1.1:2011
 4 ETSI ES 202 642 V1.1.1 (2010-09)
9 Situation and context related information . 34
9.1 Introduction . 34
9.2 Highlevel health condition . 34
9.3 Place types and locations . 35
9.4 Mood and activity . 35
10 Service and device category related information and preferences . 36
10.1 Introduction . 36
10.2 Video preferences . 37
10.3 Numeric output . 37
10.3.1 Notifications and alerts . 38
10.4 Usability and accessibility . 38
Annex A (informative): Profile content specification . 39
A.1 Structure of profile items . 39
A.2 Description . 39
A.3 UID . 39
A.4 Reference to standards. 39
A.5 Instances . 39
A.6 Type . 40
A.7 Value range . 40
A.8 Default value . 40
A.9 Technical specification . 40
A.10 Related field . 40
Annex B (informative): Background . 41
B.1 eHealth and telecare . 41
B.2 eHealth standardization . 42
Annex C (informative): Scenarios . 45
C.1 Bert going to the bookies. 45
C.2 Sally has early onset of dementia . 47
History . 49

ETSI

---------------------- Page: 6 ----------------------

SIST ES 202 642 V1.1.1:2011
 5 ETSI ES 202 642 V1.1.1 (2010-09)
Intellectual Property Rights
IPRs essential or potentially essential to the present document may have been declared to ETSI. The information
pertaining to these essential IPRs, if any, is publicly available for ETSI members and non-members, and can be found
in ETSI SR 000 314: "Intellectual Property Rights (IPRs); Essential, or potentially Essential, IPRs notified to ETSI in
respect of ETSI standards", which is available from the ETSI Secretariat. Latest updates are available on the ETSI Web
server (http://webapp.etsi.org/IPR/home.asp).
Pursuant to the ETSI IPR Policy, no investigation, including IPR searches, has been carried out by ETSI. No guarantee
can be given as to the existence of other IPRs not referenced in ETSI SR 000 314 (or the updates on the ETSI Web
server) which are, or may be, or may become, essential to the present document.
Foreword
This ETSI Standard (ES) has been produced by ETSI Technical Committee Human Factors (HF).
Intended readers of the present document are:
• eHealth service providers;
• device manufacturers;
• software developers;
• researchers.
Introduction
Adapting an eHealth system to the individual user is essential for making it safe and easy to deploy and to use as an
effective support to independent living. Personalization can thus enhance the user's trust in the eHealth systems, and
make them more readily accepted. Personalization can range from simply setting an alarm volume according to the
user's hearing abilities and the ambient noise level, to the complex tailoring of the user's entire environment, including
the eHealth services and devices.
The present document specifies a standard for personalization of eHealth systems. The personalization is achieved by
maintaining and updating the user profile, consisting of a set of user related information, preferences and rules. The user
profile depends on and is dynamically adapted to the user's context, preferences, physical and mental abilities, and other
relevant parameters. The profile can then be used by eHealth systems to ensure an uniform user experience. The
standard builds on the personalization and user profile concept described in EG 202 325 [i.1]. The generic
personalization architectural framework is described in TS 102 747 [2] and the preferences for a wide range of services
and devices (not particularly related to eHealth) are described in ES 202 746 [1].
The Design for All approach has been adopted in the present document. It means that accessibility is considered as
something that can benefit people whether or not they have disabilities.
The URI root is upm-ns, identified by xmlns:upm-ns=http://uri.etsi.org/upm. The additional namespace which is health
specific (xmlns:health-ns in the list below) has been specified in the present document. The other additional namespaces
listed below are common with those listed in ES 202 746 [1].
ETSI

---------------------- Page: 7 ----------------------

SIST ES 202 642 V1.1.1:2011
 6 ETSI ES 202 642 V1.1.1 (2010-09)
Additional namespaces are:
• xmlns:profile-management-ns=http://uri.etsi.org/upm/profile-management;
• xmlns:personal-information-ns=http://uri.etsi.org/upm/personal-information;
• xmlns:connectivity-preferences-ns=http://uri.etsi.org/upm/connectivity-preferences;
• xmlns:interaction-preferences-ns=http://uri.etsi.org/upm/interaction- preferences;
• xmlns:notifications-ns=http://uri.etsi.org/upm/interaction-preferences/notifications;
• xmlns:communication-handling-ns=http://uri.etsi.org/upm/communication-handling;
• xmlns:consume-content-ns=http://uri.etsi.org/upm/consume-content;
• xmlns:way-finding-ns=http://uri.etsi.org/upm/way-finding;
• xmlns:health-ns=http://uri.etsi.org/upm/health.
ETSI

---------------------- Page: 8 ----------------------

SIST ES 202 642 V1.1.1:2011
 7 ETSI ES 202 642 V1.1.1 (2010-09)
1 Scope
The present document provides a standard relevant to management of user profiles for personalisation of eHealth
systems and services according to users' preferences and needs. Personalization of eHealth systems includes
personalization of the eHealth information and interaction. It specifies standardized elements of profiles including
information and preferences.
Profile aspects within the scope of the present document are:
• those provided for the primary benefit of the end-user;
• those where the end-user has rights to manage the profile contents;
• those where the end-user has the right to have a dialogue with the information owning stakeholder.
2 References
References are either specific (identified by date of publication and/or edition number or version number) or
non-specific. For specific references, only the cited version applies. For non-specific references, the latest version of the
reference document (including any amendments) applies.
Referenced documents which are not found to be publicly available in the expected location might be found at
http://docbox.etsi.org/Reference.
NOTE: While any hyperlinks included in this clause were valid at the time of publication ETSI cannot guarantee
their long term validity.
2.1 Normative references
The following referenced documents are necessary for the application of the present document.
[1] ETSI ES 202 746: "Human Factors (HF); Personalization and User Profile Management; User
Profile Preferences and Information".
[2] ETSI TS 102 747: "Human Factors (HF); Personalization and User Profile Management;
Architectural Framework".
[3] IETF RFC 4480: "RPID: Rich Presence Extensions to the Presence Information Data Format
(PIDF)".
[4] CLDR: "Unicode Common Locale Data Repository", "measurement-unit" supplemental data.
NOTE: See http://cldr.unicode.org/.
[5] ISO 80000-1:2009: "Quantities and units - Part 1: General".
[6] vCard: The Electronic Business Card, Version 2.1.
NOTE: See: http://www.imc.org/pdi/vcard-21.txt.
[7] ETSI TS 102 334 (all parts): "Network Address Book on fixed network".
[8] XML Schema Part 2: Datatypes Second Edition (October 2004).
NOTE: See http://www.w3.org/TR/xmlschema-2/.
ETSI

---------------------- Page: 9 ----------------------

SIST ES 202 642 V1.1.1:2011
 8 ETSI ES 202 642 V1.1.1 (2010-09)
2.2 Informative references
The following referenced documents are not necessary for the application of the present document but they assist the
user with regard to a particular subject area.
[i.1] ETSI EG 202 325: "Human Factors (HF); User Profile Management".
[i.2] ETSI EG 202 421: "Human Factors (HF); Multicultural and language aspects of multimedia
communications".
[i.3] ETSI SR 002 564 (V2.0.0): "Applicability of existing ETSI and ETSI/3GPP deliverables to
eHealth".
[i.4] eHealth Ministerial Declaration: "The Contribution of ICT to Health. Ministerial Conference and
Exhibition"; Brussels, 22-23 May 2003.
NOTE: Available at:
http://ec.europa.eu/information_society/eeurope/ehealth/conference/2003/doc/min_dec_22_may_03.pdf.
[i.5] WHO: "International Classification of Diseases (ICD)".
NOTE: Available at: www.who.int.
[i.6] WHO: "International Classification of Functioning, Disability and Health (ICF)".
[i.7] WHO: "International Classification of Health Interventions (ICHI)".
[i.8] WHO: "Guidelines on the use of International Nonproprietary Names (INNs) for Pharmaceutical
Substances".
[i.9] Oh H, Rizo C, Enkin M, Jadad A: What Is eHealth (3): "A Systematic Review of Published
Definitions", J Med Internet Res 2005;7(1):e1.
NOTE: See http://www.jmir.org/2005/1/e1/.
[i.10] Eysenbach G. "What is e-health?" J Med Internet Res 2001 Jun 18;3(2):e20.
NOTE: See http://www.jmir.org/2001/2/e20/.
[i.11] Mitchell J. "From telehealth to e-health: The unstoppable rise of e-health", Canberra, Australia:
Commonwealth Department of Communications, Information Technology and the Arts
(DOCITA); 1999.
[i.12] "Integrating Community Equipment Services (ICES)" (January 2005): "Telecare".
[i.13] Doughty, K., Cameron, K. and Garner, P. (1996): "Three generations of telecare of the elderly"
Journal of Telemedicine and Telecare 2(2): 71-80.
[i.14] ISO 215: "Documentation - Presentation of contributions to periodicals and other serials".
3 Definitions and abbreviations
3.1 Definitions
For the purposes of the present document, the following terms and definitions apply:
accessibility: ensuring that all sectors of the community have equal access to communications and online information
administrator: person who defines profiles with profile data
NOTE: Also known as profile administrator.
ETSI

---------------------- Page: 10 ----------------------

SIST ES 202 642 V1.1.1:2011
 9 ETSI ES 202 642 V1.1.1 (2010-09)
carer: individual who provides health or social care to the client
NOTE: Both professional and informal carers are included in this category.
client: individual receiving the eHealth service, to support independent living and/or using eHealth services for the care
of his or her own health and wellbeing
eHealth service provider: provider of eHealth services to a group of people
formal carers: professional providing care for the client
health/care professionals: professionals (e.g. clinicians, doctors, occupational therapists, social workers) involved in
the assessment of clients and delivery of more specialist care than that provided by carers
informal carers: relatives, neighbours, friends or volunteers providing care for the client
profile: set of user related information, preferences, rules and settings which affects the way in which a user
experiences terminals, devices and services
NOTE: The use of the word profile in the present document implies user profile unless otherwise stated.
profile provider: entity (e.g. company such as a service provider, organisation such as a special interest or affinity
organization) that provide profiles and associated services
rule: statement that can be interpreted by the profile system to produce or limit an action
state: aspect of users and their devices and services
template: set of rules and settings provided by an entity as a starting point for the user for the creation of their profiles
usability: extent to which a product can be used by specific users to achieve specific goals with effectiveness,
efficiency and satisfaction in a specified context of use
user: person using ICT services
user profile: See profile.
3.2 Abbreviations
For the purposes of the present document, the following abbreviations apply:
ACR-NEMA American College of Radiology - National Electrical Manufacturers Association
ADL Activities of Daily Living
CEN Comité Européen de Normalization
COPD Chronic Obstructive Pulmonary Disease
DICOM Digital Imaging and Communications in Medicine
EAACI European Academy of Allergy and Clinical Immunology
EHR Electronic Health Record
FIC Family of International Classifications
HL7 Health Level 7
ICHI International Classification of Health Interventions
ICT Information and Communications Technology
IDR Informatics for the Disabled and Rehabilitation
IFIP International Federation for Information Processing
IHE Integrating the Healthcare Enterprise
NLU Natural Language Understanding
NPS Nomenclature for allergy Position Statement
PCI Primary Care Informatics
PHR Personal Health Record
PPD Personal Portable Devices
SDO Standards Developing Organization
SFC Scottish Funding Council
UPM User Profile Management
WAO World Allergy Organization
ETSI

---------------------- Page: 11 ----------------------

SIST ES 202 642 V1.1.1:2011
 10 ETSI ES 202 642 V1.1.1 (2010-09)
WG Working Group
WHO World Health Organization
4 Overview of the personalization and profile concept
4.1 Introduction
For the convenience of the reader, this clause provides an brief overview of the personalization and user profile concept
as described in more detail in EG 202 325 [i.1]. Further information can also be found in ES 202 746 [1] which
provides standardized user profile preferences and information. The personalization and user profile Architectural
Framework is described in [2] (not restricted to eHealth personalization). The present document concentrates on the
eHealth aspects of the user profile. From now on in the present document, the term "profile" will be used with the
meaning "user profile".
4.2 What is a profile?
A profile contains details of the user and their personal requirements in a form that can be used by a system to deliver
the required behaviours. When users wish to have the behaviour of devices or services personalized to their
requirements, a profile will be required for:
• storing information, preferences and rules;
• making the information and preferences available to services/devices and when relevant also to other people.
Users require the data to be stored in a secure manner with user agreed levels of privacy applied to the availability and
distribution of that data.
In the present document, the profile is often referred as if it is a single functional entity. However, parts of this profile
may be distributed amongst a number of storage locations that include the user's services and devices. There may also
be copies of profile data stored in devices or services and in a centralized location. Wherever the data is stored, the
profile system will ensure that the data is synchronized when relevant. When new devices are acquired, factory set
information and preferences may be updated by information and preferences copied from equivalent data that is already
in the user's profile.
Major factors of the profile concept described in the present document, that distinguish them from profiles described in
many other sources, are:
• the primary purpose of the profiles are to offer benefits to users;
• profiles contain information that allows users to configure services and devices to meet their individual needs;
• most of the data in the profile is considered to be owned by the user;
• the user ca
...