Standard for Personalized eHealth Services
Torbjørn Sund
1
, Nick Hine
2
, Francoise Petersen
3
and Mike Pluke
4
1
Telenor R&I, Fornebu, N-1331 Norway
2
University of Dundee, DD1 4HN U.K.
Apica, Biot, France
4
Castle Consulting Ltd., Ipswich, U.K.
Abstract. Stimulated by the rapid development in ICT, wireless communication
and sensor development, patient care is moving out of the institution and into
the personal realm. The move requires that eHealth systems should be tailored
to the user, including personalization and adaptation to user context. This pa-
per describes ongoing work to establish a standard for such personalization. The
standard builds on the user’s preferences and current situation, which together
define the current user profile. This profile can then be used by eHealth services
and devices to ensure a user experience tailored to each person and situation. The
work surveys relevant areas of personalization, like identity management, profile
management etc, addressing those aspects of personalization that are specific to
eHealth: user capabilities, care provider roles and functions, health related infor-
mation, and confidentiality measures.
1 Introduction
eHealth enables patient care to move out of the hospital and into the personal realm. The
transformation is facilitated by the rapid development in mobile, wireless technologies
and sensors, and it helps people to lead an independent life outside of institutions [1].
However, the move towards personalized health care means that people who are not
particularly trained in the use of ICT will deal with complex equipment, which may be
life critical, and which may contain confidential and vulnerable information. Equipment
and services for personal health care therefore must be highly adaptable, and it must be
possible for the user to personalize the equipment to accommodate his or her individual
mental and physical capabilities [2]. Furthermore, since the equipment will be used in
varied environments it should also adapt easily to the user’s current context.
Clearly, standardization is needed for these important user aspects of eHealth sys-
tems. Firstly, standardization will ensure that personalization is handled similarly and
predictably in different eHealth systems. Secondly, it will enable different systems to
exchange user preference data, thereby freeing the user from repetitive, tedious and
Work funded by the European Telecommunications Standards Institute with support from the
European Commission and the European Free Trade Association.
Sund T., Hine N., Petersen F. and Pluke M. (2009).
Standard for Personalized eHealth Services.
In Proceedings of the 1st International Workshop on Mobilizing Health Information to Support Healthcare-related Knowledge Work, pages 42-48
DOI: 10.5220/0001814100420048
Copyright
c
SciTePress
error-prone input of preferences. Thirdly, standardization will reduce the possibility of
potentially dangerous misunderstandings. To achieve these goals, the Human Factors
and eHealth Technical Bodies of the European Telecommunications Standards Institute
(ETSI) have created two specialist task forces, STF342 [3] which specifies an architec-
ture for personalization and user preferences in general, and STF352 [4] which stan-
dardizes the personalization of eHealth systems in particular. The current paper reports
on the on-going work of the latter.
2 Methods
For the purpose of this work, users of eHealth equipment and services are classified in
two main groups: The eHealth client whose health and well-being is monitored, and
the carer, the person or group of persons acting in the role of a health worker. The
current work deals with the eHealth client, and considers how the client’s preferences
and dynamic context are mapped to a particular user profile.
2.1 User Preferences
The User Perspective. The standard being developed will recommend a uniform way
of specifying preferences, both in terms of what can be specified, how they should be
specified, and what effect they should have on system behaviour. Currently, the pref-
erences that can be selected by the client of an eHealth equipment or service are not
standardized, and value ranges and effect upon system behaviour are not consistent.
For example, preferences like “loud volume” or “large font” should always result in the
same and standardized user experience.
The Carer Perspective. The information about the eHealth client that is supplied to a
carer must be adapted to the carer’s competence and professional level. However, the
carer may not be educated in either health or ICT. He or she can be a neighbour,relative,
social worker, house assistant or even (in case of emergency) a random passer-by. The
eHealth system therefore must have a way of classifying the carer, and use this to map
the client’s profile data to terms that are readily understood by the carer.
As an example, the eHealth system may have recorded that the client is deutera-
nomalous. Most people will not understand this, so unless specifically asked for the
medical term, the system should supply the common term of red/green blindness in-
stead.
The Engineering View. When preferences are specified according to a common nomen-
clature, it will be possible for systems to exchange user preference data without the in-
tervention of the client. Thus new installations of eHealth equipment can immediately
be adapted to the user, and the user is relieved of having to go through much of the
current tedious and sometimes difficult installation procedures.
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2.2 User Context
An eHealth system can help the client to lead an independent life in his/her normal
environment. However, being free to roam about, the client’s context will be much more
variable than when the client is institutionalized. Since the appropriate reaction in one
context can be ineffective or even detrimental in another context, the eHealth system
should register and adapt to the client’s context when necessary.
It would be futile to try and standardize the almost uncountable number of possible
different contexts. However, the standard aims to supply a framework for specifying
and classifying those context variables that may have an effect upon the client’s health
and well-being, and the possible consequence for eHealth system behaviour.
2.3 User Profile
The user’s detailed context will be highly variable and too complex to be useful as di-
rect input to an eHealth system. We therefore introduce the concept of a “situation”,
which is defined by the state of a number of relevant context variables. For example, a
“Sleeping at Home” situation could be defined by the state of sensors in the home that
detect that the client is in the bedroom and not moving [5, 6]. Well-being related situa-
tions such as “Normal”, Stressed” and “In Need of Assistance” could be defined by the
state of sensors worn on the client’s body [7]. Each situation will have a corresponding
user profile, which should be used by the eHealth system to adapt its behaviour corre-
spondingly. This would include calls to medical assistance in the case of emergency or
“Need of Assistance”.
3 Results
This paper reports on on-going work in the STF352. It builds on a large knowledge base
on personalization, human factors, context and privacy issues; applying and adapting
results from these fields to the field of eHealth.
3.1 Personalization Issues
ETSI has described a concept and developedguidelines relevant to users and their needs
to manage their profiles for personalization of services and devices [8]. For a single
product or service it may be difficult for a user to manage all of the information needed
in their profile. Primarily the users need to understand how their profile affects their
eHealth services. They will need to view and update the content in their profile. In
addition they should be informed when other entities access their eHealth profile.
Concerning the information that an eHealth system has about a user, personalization
is an issue both for the carer and the person being cared for, both during the search for
information about a person’s illness or medical status, and when this information is
applied for selection of treatment and medication. At the same time, the user should
be able to choose and personalize what information shall be related to which carer and
under what circumstances.
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3.2 Privacy of eHealth Information
Maintaining the privacy of health information is of the highest importance, so it should
only be made available to appropriate people depending on the circumstance. This im-
plies the need to be able to authenticate the identity of a person accessing an eHealth
user profile, and to confirm that the role of the person is appropriate to the type of
information being accessed.
The rules for disclosing health related data may depend not only on the data itself,
but on several context parameters, like the health condition, the geographical location,
the person’s age, the dependencystatus, and of course on the status of the person/system
that requires access to the data. The standard will specify rules for classifying and ac-
cessing such parameters.
3.3 Roles
In order to manage privacy, for each attribute in a user profile it will be necessary to
state who has the right to view or modify the information. Such rights should be tied to
roles. Roles embrace those of health personnel, formal and informal carers and telecare
agents. Some roles may be mutually exclusive, others may be complimentary, and one
person may have different roles in different situations. A standard for classification of
roles related to eHealth personalization is therefore needed, and will be included in our
work.
Also needed is an internationally agreed upon system for certifying the role of a par-
ticular person. For the appropriateness of roles to be confirmed it will thus be necessary
to ensure that a person’s eHealth profile contains an accurate record of their eHealth
related role. The extensive ETSI work on a Universal Communications Identifier (UCI)
[9] will be used as input (among others) to the current work, thereby ensuring a reliable
way to authenticate the identity of a person accessing an eHealth profile.
eHealth roles identified in our work comprise the following: Doctor, carer, informal
carer, care mediator, emergency service, client and client administrator. For each of
these roles, there will be different ways of characterizing the user, different views of the
eHealth system, and different access rules.
3.4 System Architecture
A general model for user profile management is being proposed by the ETSI project
team STF342. Our results will be used to extend this model into the eHealth domain.
In the model, it is suggested that maintaining and updating the user profile according
to preferences and context should be performed by a Profile Agent. The architecture of
the Profile Agent including possible connections with external systems is depicted in
Figure 1.
Although profile data may distributed among several devices and services, to ensure
consistent behaviour the data should be managed from a single location. This is the
purpose of the Profile Storage Agent, which will handle storage and retrieval of profile
data from multiple profile storage locations, each one storing only components that
apply to a particular device or service. Ideally, profile data should always be available,
45
Fig.1. Proposed architecture of a user profile agent.
over all networks, from all supported devices and services. Consistency may be ensured
by synchronization of data and by employing transaction security.
The Profile Processing Agent will process the profile data and initiate achievement
of the behaviour encoded in profile rules. The Profile Processing Agent is responsible
for ensuring that all the operations required by the profile rules are carried out, and it
will need to initiate operations on a variety of devices and services referred to in the
profile.
The Profile Processing Agent can be further subdivided into an Evaluation En-
gine, which evaluates which preferences need to be updated when state variables have
changed, and an Execution Engine responsible for distributing the updated preferences
to the relevant devices and services. For efficiency and effectiveness some of the func-
tionality of the Execution Engine may be distributed on the relevant devices and ser-
vices.
The Editing Agent implements the user interface for viewing and editing profiles,
and the Context Handler will provide information about the user’s context to the Profile
Processing Agent. It is anticipated that much of the user context data will be provided
by functions implemented in the user’s mobile terminal and by services in the network.
3.5 Related Work on Personalization
Personalization of computer systems is an active research field, with many on-going
research projects both within and outside of Europe. Some of these projects relevant for
the current work are mentioned in the following, but the list is far from exhaustive.
IST-SMS. (Simple Mobile Services) is a project which has developedand implemented
a special SIM card able to store sensitive profile data, identity information and digital
46
certificates. The SIM offers also a digital signatures service which is useful during elec-
tronic transactions whenever the identity of the user (not of the service provider) has to
be proved or data consistency has to be verified.
IST-SPICE. (Service Platform for Innovative Communication Environment) [11] re-
searches in and develops intelligent service platform solutions for user profile and con-
text information management and anticipatory middleware functionality in the domain
of context aware service platforms.
MAGNET. (My personal AdaptiveGlobal NET) [12] has its emphasis on user-centricity,
personalization and personal networking. The objective is to improve the quality of life
for the end-user by introducing new technologies more adapted to the user. MAGNET
research focuses on environments to become smarter, more responsive, and more ac-
commodating to the needs of the individual without jeopardizing privacy and security.
4 Conclusions
Personalization will be critical to the uptake and success of new and advanced eHealth
services. Based on the ETSI standardization work in this area, the future ICT services
and devices may become part of a totally new era with radically enhanced eHealth
services.
Acknowledgements
STF352 is initiated by ETSI Technical Bodies Human Factors and eHealth, and is co-financed
by EC and EFTA under the ECs ICT Standardization Work Programme. The group will deliver
a standard covering the issues outlined in this paper by June 2010. During our work we solicit
input from all stakeholders, such as individual end-users, user representatives, clients, formal and
informal carers and organizations. We thank those who have already provided useful comments.
For more information see http://www.stf352.org.
References
1. S. A. Ballegaard, T. R. Hansen, M. Kyng (2008): Healthcare in Everyday Life - Designing
Healthcare Services for Daily Life. Center for Pervasive Healthcare. Dept Comp. Science,
Univ. Aarhus, Denmark
2. ETSI EG 202 487 (2008): Human Factors (HF); User experience guidelines; Telecare ser-
vices (eHealth), ETSI, Sophia-Antipolis
3. User Profile Management: ETSI Specialist task force 342. http:// por-
tal.etsi.org/STFs/STF HomePages/STF342/STF342.asp (last viewed: 20081017)
4. eHealth User Profiles: ETSI Specialist task force 352. http:// por-
tal.etsi.org/STFs/STF HomePages/STF352/STF352.asp (last viewed: 20081017)
5. J. Peterson. A Presence-based GEOPRIV Location Object Format. Internet Official Protocol
Standards; IETF RFC 4119. Available at: http:// www.ietf.org/rfc/rfc4119.txt (last viewed:
20081017)
47
6. H. Schulzrinne, H. Tschofenig. Location Types Registry. Internet Official Protocol Stan-
dards; IETF RFC 4589. Available at: http://www.ietf.org/rfc/rfc4589.txt (last viewed:
20081017)
7. H. Schulzrinne. RPID: Rich Presence Extensions to the Presence Information
Data Format (PIDF); Internet Official Protocol Standards. RFC 4480. Available at:
http://www.ietf.org/rfc/rfc4480.txt (last viewed: 20081017)
8. ETSI EG 202 325 (2005): Human Factors (HF); User Profile Management, ETSI, Sophia-
Antipolis
9. ETSI EG 284 004: Telecommunications and Internet converged Services and Protocols for
Advanced Networking (TISPAN); Incorporating Universal Communications Identifier (UCI)
support into the specification of Next Generation Networks (NGN), ETSI, Sophia Antipolis
10. IST-SMS (Simple Mobile Services): Project documentation available at http://www.ist-
sms.org (last viewed: 20081017)
11. SPICE (Service Platform for Innovative Communication Environment): Deliverable N:
4.1: “Ontology Definition of User Profiles, Knowledge Information and Services”, De-
cember 2006. Available at http://www.ist-spice.org/documents/D4.1-final.pdf (last viewed:
20081017)
12. MAGNET (My personal Adaptive Global NET): Project documentation available at
http://www.telecom.ece.ntua.gr/magnet/index.html (last viewed:20081017)
48