PERSONAL HEALTH BOOK

A Novel Tool for Patient Centered Healthcare

Juha Puustjärvi

University of Helsinki, Helsinki, Finland

Leena Puustjärvi

The Pharmacy of Kaivopuisto, Helsinki, Finland

Keywords: Patient centered healthcare, Personal health records, Information therapy, Drug therapy, Semantic web,

Ontologies, XML, RDF, OWL.

Abstract: Patient centered healthcare is based on the assumption that physicians, patients and their families have the

ability to obtain and understand health information and services, and make appropriate health decisions.

This in turn presumes that patient’s personal health information is presented according to individuals

understanding and abilities. Based on this argument our research has focused on analysing whether the

existing PHRs (Personal Health Records) support patient centered healthcare in an appropriate way. The

analysis of these questions led to the introduction of the Personal Health Book (PHB). It is an extension of

PHR in that all healthcare providers, who are involved in patient’s healthcare, augment the PHB by links to

relevant information entities. In this paper we consider two approaches for maintaining PHBs: one extends

XML based PHRs while the other exploits semantic web technologies in PHBs’ implementation. In

particular, we present the advantages that can be achieved in using semantic web technologies such as RDF

and OWL.

1 INTRODUCTION

“Patient centered healthcare” is the term that is used

to describe healthcare that is designed and practiced

with the patient at the centre (Bauman et al., 2003).

It is based on the assumption that physicians,

patients and their families have the ability to obtain

and understand health information and services, and

make appropriate health decisions (Gillespie et al.,

2004). This in turn presumes that patient’s personal

health information is presented according to

individuals understanding and abilities.

Based on this argument our research has focused

on analysing whether the existing PHRs (Personal

Health Records) (Agarwal et al., 2006; Kaelber et al,

2008; Lewis et al., 2005; Tuil et al, 2006) support

patient centered healthcare in an appropriate way.

As far as we know, this viewpoint is not addressed

in scientific articles though patient centered

healthcare is widely studied in literature, e.g., in

(Little et al., 2001; Michie et al., 2003; Stewart,

2004; Thompson, 2004; Puustjärvi and Puustjärvi,

2010).

In particular, we have analyzed the following

questions:

• What are the shortcomings of XML-

based PHRs in supporting individuals

understanding and abilities?

• What health information an ideal PHR

should contain?

• What functionalities a PHR system

should provide?

The analysis of these questions led to the

introduction of the Personal Health Book (PHB). It

is an extension of PHR in that all healthcare

providers, who are involved in patient’s healthcare,

provide appropriate content for the PHB. For

example, the extra work required from physicians is

just to augment their diagnosis by appropriate links

to relevant medical information entities, e.g., on an

information entity dealing blood pressure.

Correspondingly, in dispensing a drug a pharmacist

386

Puustjärvi J. and Puustjärvi L..

PERSONAL HEALTH BOOK - A Novel Tool for Patient Centered Healthcare.

DOI: 10.5220/0003271303860393

In Proceedings of the International Conference on Health Informatics (HEALTHINF-2011), pages 386-393

ISBN: 978-989-8425-34-8

 2011 SCITEPRESS (Science and Technology Publications, Lda.)

augments the prescription by appropriate links, e.g.,

by a link to Diovan (a drug for reducing blood

pressure).

In such a PHB-based healthcare model, patient’s

physicians are responsible of patient’s information

therapy and pharmacists who dispense drugs for

patient are responsible of patient’s drug therapy.

Correspondingly all sources, such as a trainer in

patient’s gym, that are involved in patient’s

healthcare and generate data into PHB should also

augment the PHB by appropriate information.

The PHB-based healthcare model presumes that

the information entities that are used in the therapy

are accessible in the web, i.e., each entity should be

stored in the PHB or have a url (uniform resource

locator) in the PHB. This, however, does not require

the creation of new content as relevant information

entities already exist in digital form, and which can

be accessed by the systems used by the healthcare

providers. For example, in most countries such

medical information entities are maintained by

medical authorities.

From technology point of view the PHB-based

healthcare model presumes that PHBs are internet

based meaning that the PHBs are stored at a remote

server. So PHBs can be shared with healthcare

providers that are authorized by the patient. They

also have the capacity to import data from other

information sources such as from a pharmacy, a

hospital laboratory and physician office.

In this paper, we restrict ourselves on analyzing

how modern ICT-technology can be exploited in

implementing PHBs. First, in section 2, we motivate

the introduction of PHBs by considering the

problems encountered in using standard PHRs in

patient centered healthcare. By the term “standard

PHR” we refer to PHRs, which are based on a

standardized XML schema such as the schemas

presented in CCR- (CCR, 2009) and CCD-standards

(CCD, 2009). As we will illustrate, the drawback of

these standard PHRs is that they are focused on

storing health oriented data instead of supporting

health oriented information that is required in patient

centered healthcare.

In Section 3, we consider the development of

PHBs by extending standard PHR by information

therapy (Ix) (Trevena et al., 2006) and drug therapy

(Metler and Kempler, 2004). Then, in Section 4, we

consider the advantages that can be achieved in

implementing the PHB by exploiting semantic web

technologies. In particular, we present the

advantages that can be achieved in using RDF (RDF,

2004) and OWL (OWL, 2006) in developing an

ontology (Davies et al., 2007) for the PHB. Finally,

Section 5 concludes the paper by considering the

drawbacks and advantages of PHBs as well as our

future research.

2 STANDARD PHR AND PATIENT

CENTERED HEALTHCARE

2.1 Standard PHRs

PHRs allow individuals to access and coordinate

their lifelong health information and make

appropriate parts of it available to those that are

authorized by the individual (Puustjärvi and

Puustjärvi, 2009). The commonly accepted goal of a

PHR is to provide a complete and accurate summary

of the health and medical history of a consumer

(Angst et al., 2008). A PHR typically includes

information about medications, allergies,

vaccinations, illnesses, laboratory and other test

results, and surgeries and other procedures.

PHRs can be classified according to the platform

by which they are delivered, and so the distinction

between paper-based, portable-storage based, PC-

based and Internet–based PHRs can be made.

However, in this paper by the acronym PHR we

refer only to Internet-based PHRs.

PHRs have the potential to dramatically change

healthcare in the near future as they enable patients

to become more involved and engaged in their care

and allow other authorized stakeholders to access

information about patients that was previously not

available. The changes effected by PHR systems

could have a significant, positive impact on the

efficiency of healthcare sector and thus resulting

considerable cost savings to the healthcare systems.

However, many barriers exist to widespread PHR

installation, adoption, and use, foremost among them

the lack of the compatibility of the systems within

healthcare sector (Puustjärvi and Puustjärvi, 2008).

In order to avoid the compatibility problems in

importing data to PHRs various standardization

efforts on PHRs have been done. In particular, the

use of the Continuity of Care Record (CCR

standard) of ASTM and HL7’s Continuity of Care

Document (CCD standard) has been proposed for

using in standardizing the structure PHRs. From

technology’s point of view CCR and CCD-standards

represent two different XML schemas designed to

store patient clinical summaries. On the other hand,

both schemas are identical in their scope in the sense

that they contain the same data elements.

PERSONAL HEALTH BOOK - A Novel Tool for Patient Centered Healthcare

387

The sections of the CCR compliant XML-

document include for example patient insurance

information, immunizations, allergies, diagnoses,

procedures and medication list. Each section

contains elements that can represent free text or

structured XML-coded text. The content of each

CCR file is captured from various sources such as

from hospital information system, a clinical

laboratory, from a pharmacy or from the patient him

or herself. In order to know who or what

organization is the source of each element in a CCR

file each data element is time and source stamped.

In order to illustrate CCR compliant documents

let us consider the XML-document of Figure 1.

<ActorID>Pharmacy of Kaivopuisto</ActorID>

<ActorRole>Pharmacy</ActorRole>

</Source>

<Text>One tablet ones a day</Text>

</Description>

<ProductName>Valsartan</ProductName>

</Product>

<Unit>milligram</Unit>

</Strenght>

</Quantity>

</Medication>

</Medications>

</ContinityOfCareRecord>

Figure 1: A CCR compliant XML-document.

Figure 1 represents a CCR file that has a

medication list (element Medications), which is

comprised of one medication (element Medication)

that is source stamped by the Pharmacy of

Kaivopuisto.

The use of XML assures that the data contained

in CCR or CCD documents can be expressed in

multiple media formats (e.g., in HTML that can be

accessed by a browser) that are friendly to both

consumers and providers. However, the problem lies

in that the data included in CCR file is not relevant

for patient’s abilities or understanding. To see this

let us next consider the imaginary scenario behind

the CCR file of Figure 1.

2.2 Motivating Scenario

Assume that patient, named Susan Taylor, having ID

AB-12345, visits a physician for a diagnosis. After

the diagnosis the physician sends (through the

electronic prescription writer) the prescription to an

electronic prescription holding store and gives the

prescription in a paper form to Susan. It includes

two barcodes: the first identifies the address of the

prescription in the holding store, and the second is

the encryption key which allows the pharmacist to

decrypt the prescription.

At the pharmacy Susan gives the prescription to

a pharmacist. The pharmacist scans both barcodes

by the dispensing application, which then loads the

electronic prescription from the prescription holding

store. Then the pharmacist delivers the prescription

into pricing system, which checks whether some of

the drugs could be changed to a cheaper one. The

pricing system notifies that Diovan should be

changed to Valsartan as it is substitutable and

cheaper, and so only Valsartan is repayable. Then

by the permission of Susan the pharmacist replaces

Diovan by Valsartan in Susan’s prescription. Finally

the pharmacist dispenses the drug to Susan and

generates the CCR-file of Figure 1 and sends it into

Susan’s PHR.

Later on at home Susan opens her PHR and

looks at the prescription received from the

physician. She is worried about the change in the

prescription as she does not have Diovan though her

trusted physician prescribed it for her. She hesitates

whether she should contact her physician before

taking her new medicine.

This kind of scenario where a patient is unaware

about the principles of her medication should not

happen. Instead, according to the goals of patient-

centered healthcare all relevant health information

should be delivered to patient and presented

according to patient’s understanding and abilities.

The problem here is that by just storing the

prescription in PHR is not the key point but rather

Susan should be informed about:

• What is the relationship between

Diovan and blood presssure?

• What is the relationship between

Diovan and Valsartan?

• What does generic substitution mean?

In our PHB the key idea is that within each

action that generates an input to a PHB also an

appropriate information entity or entities (or their

links) are also stored in the PHB. With respect to

the previous scenario it means that the physician

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388

should have stored two information entities: one

focusing on blood pressure and the other focusing on

Diovan. Further the pharmacist should have stored

two information entities: one focusing on general

substitution and one focusing on Valsartan. We next

present how such additional functions can be

technically performed.

3 TECHNICAL ASPECTS OF THE

PHB

We use the term PHB system of the software

application that manages PHBs. The connections of

PHB system to other components are illustrated in

Figure 2. In the figure, there are only three parties

(patient, pharmacist and physician) that

communicate with the PHB system, but in reality,

similar to PHR systems there may be many more

parties that are authorized by the patient.

Figure 2: The components of the PHB-based healthcare

model.

In the emergence of many new technologies

based on Web services and Semantic Web, there are

many chances for modelling PHB’s content as well

as implementing PHBs and the message exchange

between the communicating parties. Each chance

has its limitations and opportunities.

We have developed two alternative ways for

importing data into PHBs and modelling the content

of the PHBs. However both alternatives are similar

in that they are able receive CCR (or CCD) files

(XML-documents), which are then transformed in

the format that contains links into relevant

information entities. After the transformations the

documents are then inserted in the PHB.

The transformations are carried out through a

stylesheet engine (Daconta et al., 2003) (also called

XSLT engine). It takes an original XML document,

loads into a DOM source tree (Daconta et al., 2008)

and transforms that document with the instructions

given in the style sheet. The instructions use XPath

(XPath, 2008) expressions in referencing to the

source tree and in placing it into the result tree. The

result tree is then formatted, and the resulting

element is returned.

Our used two alternatives are different with

respect to the used stylesheets: one transforms the

document into an XML document and the other into

RDF/XML document. These two alternatives and

the transformation process are illustrated in Figure 3.

Figure 3: Augmenting a document by relevant links by

using a stylesheet engine.

We next consider the limitations and

opportunities of these two alternatives.

3.1 XML-based PHB

In order to illustrate the transformation into an XML

document let us consider the CCR-file presented in

Figure 1. The figure includes Susan Taylor’s

prescription in XML format. As we presented in the

imaginary scenario the final prescription was

developed as a result of generic substitution, i.e.,

Diovan was replace by Valsartan. So, according to

the PHB-based healthcare model the prescription

should be augmented by two links: one link to the

information entity that deals generic substitution,

and the other link to information entity that deals

Valsartan.

In order to produce such an augmentation the

pharmacist activates (through the prescription

management system) the stylesheet engine that

returns the XML document presented in Figure 4.

Note that in this resulted XML-document the link to

Valsartan is included in the element ProductInfo,

and the link to generic substitution is included in the

element GenericSubstitutionInfo.

Prescription

Management

System

Pharmacist

Physician

Patient

Browser

Electronic

Prescription

Writer

Internet

PHB

(datastore)

PHBsystem

Stylesheet

Engine

Stylesheet

Engine

Stylesheet

Engine

XML tree

Transformed

XML tree

Stylesheet Engine

Transformation

Resulting document

in XML or RDF/XML

Stylesheet

(XSLT document)

Original CCR

document in XML

PERSONAL HEALTH BOOK - A Novel Tool for Patient Centered Healthcare

389

<ActorID>Pharmacy of Kaivopuisto</ActorID>

<ActorRole>Pharmacy</ActorRole>

</Source>

<Text>One tablet ones a day</Text>

http://www.../medicalinfo/SubstitutionInfo

</GenericSubstitutionInfo>

</Description>

<ProductName>Valsartan</ProductName>

http://www.../medicalinfo/ValsartanInfo

</ProductInfo>

</Product>

<Unit>milligram</Unit>

</Strenght>

</Quantity>

</Medication>

</Medications>

</ContinityOfCareRecord>

Figure 4: An XML-coded prescription including links to

relevant information entities.

3.2 Ontology-based PHB

Using the XML-based PHB we can solve the

problems that Susan Taylor encountered in the

scenario presented in Section 2. However, we still

have a problem; namely in retrieving XML data we

cannot use the expression power of the query

languages developed for retrieving data that are

organized according to an ontology. Instead we have

to use query languages that access tree-structured

data such as XPath and XQuery, which expression

power is too limited for our purposes.

In order to illustrate this we will continue our

scenario. Let us assume that Susan Taylor has

stored daily her blood pressure in her PHB as her

medication (Diovan and Valsartan) should decrease

her blood pressure. After using Valsartan a couple of

weeks Susan still suspects whether Valsartan is

equally effective as Diovan. So she would like to

make the following queries:

“What is my average blood pressure during the

time when I have been using Diovan ?” and

“What is my average blood pressure during the

time when I have been using Valsartan ?”

Unfortunately these queries are outside of the

expression power of XPath and XQuery that can be

processed on XML-documents, and so Susan’s

XML-based PHB fails in retrieving this important

information.

In order to allow this kind of data-centric queries

(i.e., queries where data is extracted from various

documents and then integrated according to certain

criteria) on PHBs, we have also developed an

ontology based PHB. Its content is structured

according to an ontology, called PHB-ontology.

We have specified the PHB-ontology by Web

Ontology Language (OWL), and Resource

Description Language (RDF) is used for

representing the actual PHBs, i.e., the instances of

the PHB-ontology.

In developing the PHB-ontology we have

exploited the XML-schema of the CCR-standard. In

transforming its XML Schema to OWL-ontology we

have used on the whole the following rules:

1. The complex elements are transformed to

OWL classes.

2. Simple elements are transformed to OWL

data properties.

3. Element-attribute relationships are

transformed to OWL data properties.

4. The relationships between complex

elements are transformed to class-to-class

relationships (object properties).

However, as the OWL does not support

structured attributes we have not transformed all

complex elements to classes but rather the complex

elements that do not have identification have been

transformed to a set of properties. For example the

following complex element:

<Unit>milligram</Unit>

</Strenght>

of the CCR-file of Figure 1 is first transformed into

data properties StrenghtValue and StrenghtUnit, and

then connected to the OWL class Medication. To

illustrate this kind of transformation, a subset of

PHB-ontology is presented in Figure 5. In this

graphical representation ellipses represent classes

and subclasses, and rectangles represent data

properties and object properties.

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Figure 5: A subset of the PHB-ontology in a graphical

form.

The graphical ontology of Figure 5 is presented

in OWL in Figure 6. Due to the space limits, we

have omitted the specifications of the data properties

such as PatientName and BrandName.

<rdf:RDF

xmlns:rdf=http://www.w3.org/1999/02/22-rdf-syntax-nsl#

xmlns:rdfs=http://www.w3.org/2000/01/rdf-schema#

xmlns:owl=http://www.w3.org/2002/07/owl#>

<owl:Ontology rdf:about=“PHR”/>

<owl:Class rdf:ID=“Patient/”>

<owl:Class rdf:ID=“Medication/”>

<owl:Class rdf:ID=“Source/”>

<owl:Class rdf:ID=“Product/”>

<owl:Class rdf:ID=“LabTest/”>

<owl:Class rdf:ID=“BloodPressureTest”>

<rdfs:subClassOf rdf:resource=“#LabTest”/>

</owl:Class>

<owl:Class rdf:ID=“ColesterolTest”>

<rdfs:subClassOf rdf:resource=“#LabTest”/>

</owl:Class>

<owl:ObjectProperty rdf:ID=“Uses”>

<rdfs:domain rdf:resource=“#Patient”/>

<rdfs:range rdf:resource=“#Medication”/>

</owl:ObjectProperty>

<owl:ObjectProperty rdf:ID=“Contains”>

<rdfs:domain rdf:resource=“#Medication”/>

<rdfs:range rdf:resource=“#Product”/>

</owl:ObjectProperty>

<owl:ObjectProperty rdf:ID=“Originates”>

<rdfs:domain rdf:resource=“#Medication”/>

<rdfs:range rdf:resource=“#Source”/>

</owl:ObjectProperty>

<owl:ObjectProperty rdf:ID=“Performed”>

<rdfs:domain rdf:resource=“#Patient”/>

<rdfs:range rdf:resource=“#LabTest”/>

</owl:ObjectProperty>

</rdf:RDF>

Figure 6: A subset of the PHB-ontology in OWL.

In data storage (knowledge base) the instances of

the PHB-ontology are presented by RDF-elements.

To illustrate this, Susan’s augmented prescription in

RDF/XML format is presented in Figure. 7.

<rdf:RDF

xmlns : rdf=http://www.w3.org/1999/02/22-rdf-syntax-ns#

xmlns : info=http://www.lut.fi/ontologies/PHB-infoentities#

xmlns : po=http://www.lut.fi/ontologies/PHB-ontology#>

<rdf:Description rdf:about=”AB-12345”>

<rdf:type rdf:resource=“&po;Patient”/>

<po : PatientName>Susan Taylor</po:PatientName>

<po:Uses rdf:resource=“&po;Med-07092010”/>

</rdf : Description>

<rdf:Description rdf:about=” Med-07092010”>

<rdf:type rdf:resource=“&po;Medication”/>

<po:Contains rdf:resource=“&po;Valsartan”/>

<po : StrenghtValue rdf:datatype=

”&xsd;integer”>30</po : StrenghtValue>

</rdf : Description>

<rdf:Description rdf:about=”Valsartan”>

<rdf:type rdf:resource=“&po;Product”/>

<po:Deals rdf:resource=“&info;ValsartanInfo”/>

</rdf : Description>

< rdf:Description rdf:about=” Pharmacy of Kaivopuisto”>

<rdf:type rdf:resource=“&po;Source/>

<po : ActorRole>Pharmacy</po : ActorRole>

</rdf : Description>

</rdf:RDF>

Figure 7: Augmented prescription in RDF/XML format.

RDF is a language for representing information

about resources in the World Wide Web. It is

intended for situations in which this information

needs to be processed by applications, rather than

being only displayed to people. RDF provides a

common framework for expressing this information,

and so it can be exchanged between applications

without loss of meaning. The ability to exchange

information between different applications means

that the information represented in RDF may be

made available to applications other than those for

which it was originally created.

RDF itself is a data model. Its modeling

primitive is an object-attribute-value triple, which is

called a statement. A description may contain one or

more statements about an object. For example, in

Figure 7, the description concerning “Valsartan”

contains two statements: the first states that its type

is Product in the PHB-ontology, and the second

states that Valsartan is dealed in ValsartanInfo.

Note that OWL ontologies are also represented

by RDF (i.e., they are RDF-elements such as the

OWL ontology of Figure 6), and thus we can query

PHBs by query languages developed for RDF, e.g.,

by SPARQL (SPARQL, 2008), which is

standardized by the RDF Data Access Working

Group (DAWG) of the World Wide Web

Patient

Medication

LabTest

BloodPressureTest

ProductProductName

BrandName

StrenghtUnit

Source

ActorID

ActorRole

ColesterolTest

Value Unit

Value UnitSSN

PatientName

SubclassOf

Uses

Performed

ContainsStrenghtValue

Originates

MedicationId

InformationEntity

SubclassOfSubclassOf SubclassOf

Disease

Name

RelatesTo

DiseaseIE

Deals

SubclassOf

ProductIE

Deals

ColesterolTestIE

Deals

BloodPressureTestIE

Deals

Date Source

URL

Mother

Father

Hobby

SuffersFrom

PERSONAL HEALTH BOOK - A Novel Tool for Patient Centered Healthcare

391

Consortium, and is considered a component of the

semantic web. On January 2008, SPARQL became

an official W3C Recommendation.

4 CONCLUSIONS

The sophistication of information technology and

communications is changing our society. In the

ongoing healthcare reform, there is an increasing

need to control the cost of medical care. In this

context the significance of patient centered

healthcare care is extensively recognized as it can

help by providing information to the patients, their

families and physicians, not only for illnesses, but

also for prevention and wellness. This, however,

requires that patient’s health information as well as

other relevant medical information is presented in

appropriate format according to individuals

understanding and abilities.

PHRs have the potential to dramatically

contribute to patient centered healthcare as they

enable patient to become more involved and

engaged in their care, and allow other authorized

stakeholders to access information about patient that

has not been previously been available or difficult to

access electronically. Hence, the change that can be

caused by the deployment of PHR systems could

also have a significant impact on the efficiency of

administrative and clinical process in healthcare

sector, and thus will give rise for considerable cost

savings.

However there are many obstacles to the

widespread use of patient centered healthcare. For

example, it is turned out that most patients are not

satisfied with the medical treatment information on

the Web instead they trust on the medical

information that are managed by medical authorities.

A problem however is that how this information can

be targeted for patients.

The analysis of this problem led to the

introduction of the notion of the PHB, which is an

extension of PHR in that all healthcare providers,

who are involved in patient’s healthcare, augment

the PHB by links to relevant information entities.

This PHB based healthcare models presumes that

the information entities used in a therapy are

accessible from the web, i.e., each entity should

have a url (uniform resource locator). This,

however, does not require the creation of new

content as relevant information entities already exist

in digital form, and which can be accessed by the

systems used by the healthcare providers.

An interesting arising question is also that how

we can get patients involved in maintaining and

using a PHB (or PHR in general). Obviously, at least

by providing them by incentives we can increase the

amount of patients that keep PHBs, e.g., by

providing a discount for the patients who keep a

PHB faithfully. Also by showing that using a PHB

will help them to get better medical care would

increase their use.

In our future work we will extend the PHB

system by active elements. By an active element we

refer to an expression or statement that is stored in

PHB, and expect the element to execute at

appropriate times. The times of action might be

when a certain event occurs such as an insertion of a

blood test result. Then depending on the inserted

values an action can be taken such as generating an

email to patient’s personal physician.

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