Standard for Personalized eHealth Services

⋆

Torbjørn Sund

, Nick Hine

, Francoise Petersen

and Mike Pluke

Telenor R&I, Fornebu, N-1331 Norway

University of Dundee, DD1 4HN U.K.

Apica, Biot, France

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

 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.

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.

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,

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

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 EC’s 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)

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)