=Paper=
{{Paper
|id=None
|storemode=property
|title=Capturing and Representing Values for Requirements of Personal Health Records
|pdfUrl=https://ceur-ws.org/Vol-1023/paper16.pdf
|volume=Vol-1023
|dblpUrl=https://dblp.org/rec/conf/ifip8-1/SveeKV13
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==Capturing and Representing Values for Requirements of Personal Health Records==
https://ceur-ws.org/Vol-1023/paper16.pdf
Capturing and Representing Values for
Requirements of Personal Health Records
Eric-Oluf Svee1, Maria Kvist1,2, Sumithra Velupillai1
1
Department of Computer and Systems Sciences,
Stockholm University, Kista, Sweden
2
Department of Learning, Informatics, Management and Ethics (LIME),
Karolinska Institutet, Stockholm Sweden
{eric-sve,sumithra}@dsv.su.se
maria.kvist@karolinska.se
Abstract. Patients’ access to their medical records in the form of Personal
Health Records (PHRs) is a central part of the ongoing shift in health policy,
where patient empowerment is in focus. A survey was conducted to gauge the
stakeholder requirements of patients in regards to functionality requests in
PHRs. Models from goal-oriented requirements engineering were created to
express the values and preferences held by patients in regards to PHRs from
this survey. The present study concludes that patient values can be extracted
from survey data, allowing the incorporation of values in the common
workflow of requirements engineering without extensive reworking.
Keywords: Personal health record, basic value, health care, goal-oriented
requirements engineering, business/IT alignment.
1 Introduction and Purpose
To provide those goods or services which consumers desire in the method and manner
which they prefer, thereby fulfilling their value proposition, it is necessary for a
business to create a supporting infrastructure. Key components of such delivery
mechanisms are often information systems, and as such, methods need to be
developed which elicit and capture their values and preferences during the system
design process, while finally presenting these to the business in such a way that they
can be executed upon during the system development. The state where the goals and
strategies of the business are in harmony with its IT systems is called alignment [1].
In this study, the business is the Swedish healthcare system, with its many-layered
purposes and customers. Among these, we focus on the part of a healthcare system
where the consumers are the patients, and our goal was to learn what values patients
have in regards to Personal Health Records (PHRs). In the specific instance of
developing a successful PHR, it is important for the business (Swedish healthcare
system) to engage its consumers (patients) on a number of levels, e.g., capturing user
requirements for PHR systems during development processes and user studies, as well
as in the marketing process. Consumer buy-in is important for the success of any
product, but in particular an individualized and deeply personal one like PHRs.
Engaging a consumer’s values is a crucial step towards success.
The present research utilizes results from a survey aimed at capturing patients’
feature and functionality requests in a PHR system. These are then analyzed through
goal-oriented requirements engineering techniques to express the values and
preferences held by patients in regards to PHRs.
The paper begins with a short section to frame the general argument, and proceeds
to clarify that in §2 Story. Background is provided in §3 to ground the reader in the
concepts not common to enterprise modeling, specifically PHRs, business/IT
alignment, and Schwartz’s Value Theory. §4 presents and analyses the survey that
was used for the basis of the artifact found in §5. The work concludes with a brief
summary and future work in §6.
2 Story
Health records are abundant with detailed medical information including medical
terminology, and are also complex in their structure. It has been shown that patients
find it difficult to navigate and understand the information in their own records [2].
Electronic health record (EHR) systems are physician-oriented and do not include
patient-oriented functions [3]. One problem with medical records is that they contain
a lot of data which is usually kept as unstructured text in narrative form; this
information overload needs to be structured and presented in a manner that patients
understand. Hence, the EHR information cannot be presented directly to patients but
needs to be adapted to patient requirements when exported to patient portals or PHRs.
Furthermore, for the PHR to be a supporting tool for patients there is a need to
identify which key functions should be implemented to support patients. Usage of
PHR is highly dependent on the information offered and that functions available meet
patient needs. However, few studies focused on the features that make health records
comprehensible for lay audiences [see 2].
Several evaluations of the usage of patient portals have shown a decrease of patient
visits and increase of online prescriptions as well as telephone and e-mail
consultations [4]. These numbers of operational efficiency are presented as benefits of
PHRs, as they have positive economic implications for the health care business. Also,
patients report quicker access to health care by means of e-mail and telephone as
positive. However, less face-to-face communication and increased online
communication of sensitive nature or bad news may not be seen as a positive value
for patients.
3 Background
3.1. Electronic Health Records (EHRs) and Personal Health Records (PHRs)
EHR systems were initially developed for accounting purposes and still the basic
structure and vocabulary of business management is evident in the record systems.
Today, EHRs are one of the most important tools for physicians and other health care
professionals and are a means of communication within health care, not aimed at
communication with patients. Due to the confidential nature of the content, the
language in the EHRs has developed within a closed professional community and is
rich in terminology, abbreviations and jargon. Many EHRs also have a structure that
encourages double documentation of symptoms and events, resulting in an overload
of information.
In the information age, it is quite natural that new means of communication
between health care consumers and providers have evolved. Patients of today want to
read the information about themselves in EHRs to follow their health care process,
and want to keep their own records as PHRs. A variety of systems have been
developed for this growing market, ranging from freestanding smart phone
applications for e.g. vaccinations to EHR-integrated patient portals with online access.
The International Standardization Organization (ISO) has defined the key features of
the PHR as "it is under the control of the subject of care and that the information it
contains is at least partly entered by the subject (consumer, patient)" [5]. A PHR can,
as per the ISO definition, be one of the following "(a) a self-contained electronic
health record (EHR), maintained and controlled by the patient/ consumer, (b) a self-
contained EHR, maintained and controlled by a third party such as a web service
provider, (c) a component of an integrated care EHR maintained by a health provider
(e.g. general practitioner) and controlled at least partially (i.e. the PHR component as
a minimum) by the patient/ consumer, or (d) a component of an integrated EHR but
maintained and controlled by the patient/consumer".
Systems giving online access to (parts of) the EHR will inevitably export the
problems of EHR, such as double documentation and suboptimal navigation, to the
patients, if care is not taken in the design and functionalities offered. Also, to function
as a means of communication, functionalities for the patients to add information and
e-mail the care giver are needed. In an attempt to make EHR language more stringent
and transferable between different EHR systems, international efforts have been made
for a joint health care terminology, SNOMED CT [6]. However, using professional
language and SNOMED terminology, which does not include layman vocabulary,
will leave patients disempowered and voiceless [7].
3.2. Alignment
According to Kotler [8] consumer value plays a crucial role at the heart of all
marketing activity: it is in effect a catalyst for the value exchange and refers back to
the value proposition. This describes how the business will create differentiated,
sustainable value [9]. This unique offering of a business demonstrates the “overall
view of one of the firm’s bundles of products and services that together represent a
value for a specific customer segment” [10].
More recently, evolving these ideas, Kotler et al. [11] have stated that the next
phase of marketing will be values driven, an evolutionary step from the original
product-centric and the latter consumer-oriented types. They claim that collaborative
consumers, savvy in the tools of the Internet that rapidly evolved in the past decade,
and living in the age of globalization as part of a creative society, are driving
companies to design their propositions around values.
Accordingly, the solutions presented in this work focus on capturing basic values
and introducing them through a variety of means into the development of PHRs that
support the health care system who intend to provide goods, services, and experiences
to satisfy both patient and practitioner needs, based on their basic values, thus
providing a core example of business-IT alignment.
3.3. Values
Value has a number of accepted meanings, with the choice of usage primarily one of
context within one of two categories. Quantitative or economic is the type of value
most commonly used in business to denote an object that can be offered by one actor
to another [12] often where the worth or desirability of something is expressed as an
amount of money [12]. Economic values are generally understood as an amount in
goods, products, services or money, considered as a suitable equivalent for something
else: the material or monetary worth of a thing [13]. These are also how companies
differentiate themselves by providing a value object in a particular way [10], their
value proposition.
In contra poise are values with a qualitative nature, detailing how a good, product,
or service is delivered to, or perceived by, the consumer. These have been termed
non-economic values [9] internal values [14], or consumer values [15] among others.
While the impact of quantitative values on IT is readily seen and acknowledged,
particularly within software engineering, (e.g., value-based software engineering or
VBSE [16]), qualitative values have been researched to a much lesser degree, in
particular basic values. The business/IT alignment community has made several
attempts such as c3 [17], e3 [18], and BMO [10], to address this deficiency, although
never through the explicit use of basic values. It is through this subset of qualitative
values that this research demonstrates how development of PHRs can be improved.
Basic Values. Schwartz’s Value Theory (SVT) [19] adopts the definition of value
as a belief that a specific mode of conduct or end-state is personally or socially
preferable to its opposite. Values serve as criteria for judgment, preferences, choices,
and decisions as they underlie knowledge, beliefs, and attitudes.
According to Schwartz, all the items found in earlier value theories, including
religious and philosophical discussions of values, can be classified into one of the
following motivationally distinct Basic Values (Table 1): Power, Universalism,
Achievement, Benevolence, Hedonism, Tradition, Stimulation, Conformity, Self-
determination, and Security. SVT emphasizes the profound nature of values, but at the
same time offers the possibility of a consumer research approach by concretely
combining these value structures with an analysis of human motivation. This
integrated structure of values can be summarized with two orthogonal dimensions
(Table 1).
Table 1. Schwartz‘s Basic Values as per their Classifying Dimensions,
with examples (italicized).
Hedonism shares elements of both Openness and Self-enhancement 1 [22]
Dimension Basic Value Dimension Basic Value
Openness to Change Self-determination Self-transcendence Universalism
(independence of action, (Creativity, Freedom) (concern for the (Equality, Justice)
thought, and feeling, and Stimulation welfare/interest of Benevolence
a readiness for new (An exciting life) others) (Helpfulness)
experiences) Hedonism1 Hedonism1
(Pleasure) (Pleasure)
Self-enhancement Achievement Conservation Conformity
(pursuit of self-interests) (Success, Ambition) (self-restriction, order, (Obedience)
Power and resistance to Tradition
(Authority, Wealth) change) (Humility, Devotion)
Security
(Social order)
Reading from the upper left, Openness to Change (combining Self-determination
and Stimulation) opposes Conservation (combining Conformity, Tradition, and
Security). These dimensions reflect the conflict between an emphasis on independent
thought and action and a preference for change in opposition to self-restriction,
preservation of traditional practices, and protecting stability. Moving to the upper
right, the dimension Self-Transcendence (combining Universalism and Benevolence)
opposes Self-Enhancement (combining Power and Achievement), where in the former
one finds acceptance of others as equals, coupled with a concern for their welfare,
while in the latter lies the pursuit of one’s own relative success and dominance over
others.
The values of an individual have an effect on their behavior as consumers through
their attitudes, which in turn impact on their choices within the value exchange [14,
20, 17, 21]. Additionally, it was shown that values relate to real-life choices, and may
also influence behavior through different manifestations, such as habits [22].
Therefore, the use of values—in particular basic values—makes a solid foundation for
which to develop complex and heavily laden systems such as PHRs.
4 Study Design
A study was conducted to generate requirements that would be expressed through
goal-modeling techniques. For this, the results of an existing survey [23] were further
analyzed from the perspective of value modeling for requirements elicitation.
4.1. Survey: PHR-functions preferred by patients
To elucidate patients’ requests on a future PHR system, a thematic analysis of
interview data from five participants was used to design an online survey.
A five-point Likert scale was used to perform a descriptive analysis of the
respondents’ attitude to 18 statements, categorized in five themes: 1) overview of the
content, 2) help to understand the content, 3) help to understand screening results, 4)
communication/interaction with healthcare and 5) additional functions. Each
statement also included the option for the respondent to comment in free text.
The survey was distributed to members of five patient organizations, and it was
also made available in an online article published by a Swedish newspaper. 201
respondents participated in the survey.
4.2. Value model creation
Respondent comments were processed using a textual analysis technique from
requirements elicitation—SVO (Subject Verb Object)—to discover the key actors and
activities, as well as the patients’ values and goals. The textual analysis was
performed by three researchers (one clinician and two computer scientists).
The i* framework and language was chosen to formally express the discovered
requirements [24] because it assists in examining and understanding the relationships
among social actors [25]. Based upon the idea that a system aims to improve the
relationship that some actors have with other actors, i* was directly in line with the
focus of this research: improving PHRs through an exploration of the values and
relationships of the actors within the system. Additionally, i* possesses a more
complete set of concepts and primitives than similar goal modeling techniques such as
c3 [12], e3 [18], and BMO [26].
Both Strategic Dependency (SD) and Strategic Rationale (SR) diagrams for the
patient actor were fully developed, but due to space constraints only the SR is
included herein, see Figure 1.
5 Results
The typical survey respondent was a female aged 54 years 7 months who suffered
from some kind of illness and had good computer skills.
The survey revealed explicit answers to patients’ attitudes toward suggested
possible future functions in PHRs. The Likert scale responses revealed that almost all
the answers were at the level of “agree” and “strongly agree”.
Foremost, functions such as overviews, fact boxes and search functions were
requested both in regards to screening results and medical record content. Moreover,
the respondents wanted a clear overview of their illness and medication through
timelines. Explanations illustrated with pictures and videos, access to a medical
dictionary and text simplification were also highly requested. Also, they wanted the
possibility to add information to the PHR.
For communication with caregivers, e-mail was preferred over video calls. Chat
bots were least popular, as well as possibility to view PHR content in another
language.
In the analysis of the free text comments some key issues were discovered:
Computer Security, Anxiety, Limited Resources, Control and Fairness. Patients
expressed concern about the security of their data, not only in its transmission
electronically, but also in terms of access: is a family member, acting in the role of a
care provider, able to read the complete file, or can certain sections be secured?
Anxiety was discussed in terms of a lack of information about medical terminology,
specifically whether the records would be understandable and useful to the patients.
Anxiety and Computer Security were personal goals for the individuals and are
related to Schwartz’s value Security.
Limited Resources and Fairness were an expression of the amount of effort the
healthcare system and care providers would need to devote to maintaining such a
system; not only were patients worried about care providers expending time in writing
records in laymen’s terminology, but also whether they would be able to treat patients
as well as answer e-mails, etc. This was an interesting outcome, possibly indicating
that a high number of healthcare professionals answered the survey, as this finding
was also borne out in other research on the development of PHRs. These issues relate
to Schwartz’s value of Universalism.
The issue of Control related to patients’ requests for being able to follow their own
healthcare process, e.g. by transparency in the system for seeing which tests are taken
and which clinicians are involved in making decisions, by having the possibility to
choose treatment type, etc. This issue is related to Schwartz’s value Self-
determination.
Fig. 1. SR for Patients regarding Patient Health Records
Figure 1 highlights requirements that would satisfice for the patients’ softgoal “Self-
determination be Satisfied”. To capture, and stress the importance of, Schwartz’s
values, the i* constructs for a Softgoal Dependency were adapted for this SR, where
the depender (Actor: Patient) depends on the dependee (Resource: HealthRecord) to
perform some task that meets a softgoal (Self-determination be satisfied).
6 Lessons Learned and Future Work
Patient values can be extracted from survey data, allowing the incorporation of values
in the common workflow of requirements engineering without extensive reworking.
The importance of doing so should be evident from the references provided.
The textual analysis technique applied on the free text comments from the survey
was useful for generating values linked to Schwartz’s model, specifically Security,
Universalism, and Self-determination. Our intention is to further analyze this material
for identifying values in the remaining dimensions of Schwartz’s model. Of course
better results would have been obtained if using PVQ [21], but this study shows that it
is possible to re-use survey material created for related purposes. Additionally, the i*
[24] framework provided a suitable platform for modeling these values, possessing a
more complete feature set than similar techniques such as c3, e3 or BMO, proved to
be a sufficient choice for the goals of the study.
The current study aims to capture the patients’ views, who usually want EHRs as a
means of understanding and communication, while doctors usually use EHRs as a
legally binding means of treatment and documentation (often even between doctors).
Thus there are different requirements on medical terminology, ownership, etc. An
additional study exploring the values of health care providers has been completed to
explore this population. It highlights significant differences between physicians and
support staff, as well as those of patients. Due to the integrated nature of PHRs, this
further exploration should prove fruitful for deriving additional requirements and for
supporting the contention this research makes about addressing basic values.
In summary, this a priori approach should not only increase user acceptance, but
will consequently drive down issues such as change requests and reconfiguration.
Offering patients a tailored PHR based on their values facilitates high product
acceptance and can activate participation, in turn leading to empowered patients.
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