=Paper=
{{Paper
|id=Vol-219/paper-3
|storemode=property
|title=Patient-Centred Approach to Focusing Online Health Information Search Results
|pdfUrl=https://ceur-ws.org/Vol-219/paper02.pdf
|volume=Vol-219
}}
==Patient-Centred Approach to Focusing Online Health Information Search Results==
https://ceur-ws.org/Vol-219/paper02.pdf
Patient-Centred Approach to Focusing Online Health
Information Search Results
Dr Mikhaila S.E. Burgess, Dr Omnia Allam, Prof W. Alex Gray
and Asma Al -Busaidi.
Cardiff School of Computer Science, Cardiff University,
Queens Buildings, 5 The Parade, Roath, Cardiff CF24 3AA U.K.
{M.Burgess, O.Allam, W.A.Gray, A.Al-Busaidi}@cs.cardiff.ac.uk
Abstract. Over recent years the amount of health related information available
via the Internet has greatly increased, and is being provided by a vast array of
information providers, from government-owned public bodies to charities and
to individuals publishing based on their experiences. This paper addresses the
two main challenges to using this information: information overload and
information quality. It also proposes a unique solution to these problems that
can be used across all medical conditions, by facilitating the personalisation of
online information searches, and enabling patient access to a proposed common
EPRS in Wales.
Keywords: Information Quality, Information Overload, Internet Searching,
EPRS, Personal Health Gateway
1. Introduction
The last decade has seen an increased demand to improve the availability of health
information provided to patients and their carers. This is mainly due to:
§ Changing the healthcare delivery model to a ‘patient centred approach’ [24]
whereby healthcare provision is tailored around an individual patient’s needs
to enable people to remain in control of their treatment and live independent
lives.
§ The recent advances in technology, empowering patients by enabling access
to health information where time and geographical location no longer limit
access to information, in particular the availability of the World Wide Web
[1]. As an American study reveals:
“Fifty-two million American adults, or 55% of those with Internet
access, have used the Web to get health or medical information. A
great many are using the Web to gather information on behalf of
family and friends” Pew Internet (2006) [37]
In the UK, a wide variety of online information sources are available via the
Internet that provides a vast amount of information freely. This includes:
§ Government-controlled web sites that provide general health information for
the public such as the National Electronic Library for Health (NELH) [30]
and NHS Direct Online [32];
§ Private health providers detailing their services, such as the British United
Provident Association (BUPA) [10] that provides an A-Z index for
information on healthy living, conditions and treatments;
§ Non Government Organisations (NGO) such as the British Heart Foundation
(BHF) [7] and Macmillan Cancer Support (MCS) [26]. These typically
provide information to support patients in achieving the best possible quality
of life by providing, for example, subject-specific information, details on
medication and available therapies, and online support forums;
§ Individuals (professional and/or interested amateurs) publishing knowledge
online for use by others, e.g. Will’s World [25];
§ Business sectors potentially advertising their products, such as
GlaxoSmithKline [16] providing positively-slanted information about their
prescription drugs, and Imperial Tobacco publishing comments on smoking
and health [21];
§ Blogs, online diaries and online discussion forums, where individuals can
discuss any topic they wish, including healthcare issues, and receive
comments back from others, such as the web site of BBC journalist Ivan
Noble that described his experience of living with a brain tumour and
explained how searching the net for information on his condition gave him a
‘severe fright’ [34].
Although plentiful, a number of challenges still hinder patients and their carers
when searching for high quality, reliable health information via the Internet.
“It is wonderful that so much information is available and that patients
can be as well informed as they want to be. But it is very difficult to filter
that information. It is not possible to start search the net and hope to see
only encouraging news” Noble (2002) [33].
Our paper addresses the two main challenges facing those who search for
information online, that of information overload and information quality, and presents
a generic system that will overcome these obstacles. It also highlights other
challenges, such as information security, and proposes potential solutions.
In this paper we present the pilot stage of the Personal Health Gateway (PHG)
project. The first stage of this project is to develop an advanced Internet search
facility to combat the issues of information overload and information quality, by
enabling individuals to personalise their information search requirements based on,
for example, the type of information they require (such as potential side-effects of
prescribed medication), their current medical condition and medication, stage of
illness, support needs, and prior level of medical knowledge. These, plus many other
factors, will influence the type of information the individual requires and thus can be
used to focus Internet search results to increase the perceived quality of the obtained
information.
Once completed, the second phase of this project plans to develop a link to a
common electronic patient record, as proposed for Wales in [3]. Providing patients
with access to their electronic record will enable them to gain a fuller understanding
of their condition, and use this information as a basis for online searching.
The remainder of this paper is organised as follows. Section 2 discusses the two
main challenges to information searching on the internet, those of information
overload and information quality. Section 3 then introduces our proposed approach to
combating these problems: the Personal Health Gateway. This is a generic approach
that empowers patients, their families and their carers by encouraging patient
ownership of their health information and Internet searching preference criteria,
related to any medical condition. In section 4 the paper then presents the future
development for this project, including linking to the proposed common Electronic
Patient Record System (EPRS) in Wales [3] and the development of Travelling
Health Companion.
2. Internet Search Challenges
When diagnosed with a condition, for example cancer, patients use the internet either
directly of via friends and family for a number of reasons. These reasons include, but
are not limited to:
• To interpret symptoms
• To obtain second opinions
• To make sense of medical terminology
• To tackle feelings of isolation
• To develop social connections
• To identify questions for their doctor
• To find alternative and complementary therapies for their condition [38]
As stated in section 1, the two main challenges to finding this and other
information on the Internet are information overload and information quality. This
section describes these two issues in further detail.
2.1 Information Overload
“The term information overload describes situations in which the
individual is no longer able to integrate new information for decision-
making, due to the great amount of information he or she is exposed to.
He or she can no longer productively use the quantity of information in
the available time scale. In consequence, decision quality, efficiency,
and even well-being may be reduced” Eppler (2001) [13].
As the volume of available information increases the information consumer begins to
suffer from information overload [23, 31, 40], where it becomes increasingly difficult,
or even impossible, to find the information they require amongst that which is
available.
For example when conducting a standard Internet search using an engine such as
Google [14, 35] for a simple sentence such as ‘cancer support group’, over 50 million
results are returned. The required information may be included within this result set,
but this often also includes a large number of irrelevant information. Consequently, it
becomes impossible to manually search through them all to identify the relevant
subset. The information overload problem, also known as ‘cognitive overload’ or
‘information fatigue’, is compounded when the information is also of dubious quality,
and is presented in a diverse array of formats (e.g. text vs graphical, precise vs vague,
local vs international standard, professional medical vs amateur produced
information, etc). This multidimensional view of information overload is shown in
Figure 1.
Fig. 1. Information overload as a three-dimensional problem [19]
Although the Internet makes an immense amount of information available to
individuals and patients, information overload can result in a number of difficulties
[41]. For example:
• Failing to hear about latest developments regarding treatments for their
illness;
• Obtaining incomplete or incorrect details on the side-effects of their
medication;
• Failing to find online descriptions of the experiences of others suffering from
the same condition;
• Being unable to locate local support groups and thus missing out on
potentially life -changing experiences;
• Finding condition-specific information, but in a form that requires prior
medical knowledge in order to comprehend its contents, thus failing to find
required information due to the use of specialised terminology.
This problem is not specific to patients and their carers. It also impacts the
information processing effectiveness of medical professionals, affecting, for example,
their ability to keep informed of the latest medical developments [18].
2.2 Information Quality
Quality information is typically defined as that which is ‘fit for use’ [22]. This implies
that the quality of some piece of information is dependent upon the use to which it is
being applied. So, what may be considered as being high quality information in one
situation may not be perceived as such in another. This section discusses the issue of
quality information on the Internet, focusing on the two issues of the differences
between individual information searchers and the variety of information providers. It
concludes with a discussion on Google and the PageRank algorithm, which goes some
way towards tackling this issue.
2.2.1 Individual Differences
“The notion of information quality depends on the actual use of
information. What may be considered good quality information in one
case (for a specific application or user) may not be sufficient in another
case” Huang et al (1999) [20].
The quality of internet search results, as perceived by the searcher, will vary for a
number of reasons. These reasons include, but are not limited to, the following:
§ Prior knowledge of the topic or medical condition being investigated;
§ Expectations of the individual – information perceived as being of high
quality by one individual may be perceived as poor quality by another;
§ Bias of the information producer (independent health professional or
organisation, local health authority, drug company, pharmacy)
§ Current information requirements, such as whether peer-reviewed scientific
information is required (e.g. an article from the BMJ [9]) or a non-technical
overview of a specific medical condition (e.g. explanation of heart disease
from the British Heart Foundation [7]).
Due to the unique nature of every individual, a single search method that assumes
all people are the same will fail to meet every person’s information needs.
2.2.2 Varying Quality Amongst Information Providers
“Information quality is the main discriminator of data and data
sources on the web” Naumann (2001) [28].
Information obtained from different sources will typically be of differing levels of
quality. When searching for information online sites can often contain out-of-date or
unavailable information [39], incorrect information [4, 5], or provide access to people
selling substances not intended for general use, such as drugs with little of no safety
instructions [5, 6]. This is partly due to the lack of controlling body, and that
available information is constantly changing within such a fluid environment. Sites
may also provide access to unscrupulous sources selling prescription-only drugs
without requesting a prescription, often resulting in damaged, incomplete, incorrectly
packaged and even incorrect orders being delivered to their customers [17]. Previous
studies in the health-care domain have highlighted the worryingly poor-quality of
some online information providers, and the detrimental effect this can potentially
have on consumers [12]. This lack of quality becomes a concern when people believe
what they see with little or no regard as to its accuracy [15].
2.2.3 Google and the PageRank Algorithm
Google’s PageRank algorithm [36] goes some way towards improving the quality of
Internet search results, by ranking highly those web sites that are referenced by many
other sites, with more emphasis on links from sites which are themselves considered
as being of high quality. This in effect incorporates peer reviews of web sites from
other site developers. Alongside this, Go ogle’s ranking method also takes into
account user feedback for each site and favours sites that are frequently updated.
Google’s method for ranking the relevance of web pages retrieved from an
information search has made it one of the most popular Internet search engines.
However, the main problem with this, and other, online search services is the
assumption that all individuals have the same information requirements. Two users
querying an online search system at the same time, entering the same keywords, will
receive identical search results, yet they are likely to have different opinions regarding
the quality of that information due to their different opinions, needs, prior knowledge,
etc. A one-method-suits-all approach cannot meet the needs of all individuals.
Our proposed approach builds on search technologies developed by such
organisations as Google by providing additional search personalisation facilities,
enabling individuals to explicitly state their current search preferences, and resulting
in a focused set of Internet search results.
3. Personal Health Gateway
To combat the aforementioned issues of information overload and information quality
when currently searching for health information on the Internet we propose an online
Personal Health Gateway to assist individuals in finding the best available
information based on their current information requirements.
In previous work we showed that it is possible to focus information search results,
within a closed-world environment, based on varying personal information
preferences [11]. This project builds on that work by using the developed techniques
within an open environment – the Internet. By providing the information searcher
with a method for customising their search by stating their current information
preferences the results of an Internet search conducted, for example, using Google,
can be focused based on their requirements. The probability of these results meeting
their current need is thereby increased, resulting in a perceived increase in search
quality.
Fig. 2. Prototype information search web interface
The prototype information search web interface is shown in Figure 2. The user can
currently enter some search term, or terms, and conduct a standard Internet search
using that term alone. This does not, however, improve on the currently available
search systems. The first stage of this project will therefore concentrate on providing
a facility to allow the user to focus their search by selecting from a number of factors,
highlighting their information requirements, such as illustrated in Figure 2. These
preferences will be used during the search process to ensure that the returned result
set ordering prioritises information currently required rather than relying on the user
to manually sift through a large number of potential results to find those that are
suitable. Initially experimentation will be conducted offline on a static data set,
obtained from currently available online information providers, in order to
demonstrate the feasibility of such a system. Once completed the search facility will
be opened up to live Internet data and be made accessible to all potential users.
4. Future work
In section 3 we introduced our prototype web interface for our proposed search
facility, to facilitate the personalisation of information search requests in order to
focus the returned result set based on current individual requirements. Further
development is required before this system can be launched, and used by patients and
others wishing to discover health-related information via the Internet.
However, a number of other further developments are planned for investigation
within this current project. In this section we briefly introduce these planned
developments to the Personal Health Gateway.
Fig. 3. Future developments for PHG
4.1 Personal Health Record
Figure 3 illustrates the additional features to be incorporated into PHG. Section 3
discussed the Information Search facility currently being developed. The second
aspect to PHG is intended to provide patients with access to their personal electronic
patient record. Previous work conducted with Velindre NHS Trust, the South East
Wales cancer centre, proposed the development of a common Electronic Patient
Record System (EPRS) for Wales with the aim of recording and supplying required
information to all care sectors according to the needs and working practices of
clinicians in each care sector [3]. The legal right for each patient to access their health
records is currently rarely exercised. By providing access to this proposed EPRS
patients will be able to freely access this information, initially only via designated
locations such as NHS hospitals and GP surgeries. This ensures security of personal,
potentially sensitive, information and will alleviate patient concerns regarding the
transport of secure information across the WWW.
Medical information may not be comprehensible to all patients due to their lack of
medical expertise. Both the PatientKB [2] and PIGLET [8] projects are starting to
tackle this by using ontologies (in the former) and artificial intelligence techniques (in
the latter) to generate simple explanations of medical terms to facilitate patient
understanding of their condition. The results of these and other projects in this area
thus need to be considered and incorporated into the proposed PHG in order to
empower patients by increasing accessibility of their personal health record.
4.2 Travelling Health Companion
The third facility to be developed during the PHG project is a Travelling Health
Companion (THC). A personal ID and password will allow access to this section via a
web browser, from any location. Within this section each user can develop a personal
profile detailing current health conditions and medications, personal notes made as a
result of a session with a clinician or therapist, notes for their next clinical
appointment (such as questions they wish to ask), results of previous Internet searches
and links to potentially useful online information. The THC will also enable the
patient to create a personal health overview to share with others, such as family or
carers.
4.3 Further Developments
A number of other developments are also proposed for future inclusion in the PHG
project. These include, but are not restricted to, the following:
• The incorporation of automatic quality evaluations of online information to
ensure individuals receive accurate, reliable information over poor quality
web resources, using techniques developed in such projects as [27]and [29].
• The development of a dynamic ontology to describe, and learn from
experience, the perceived information requirements of PHG users. For
example, one default set of search preferences can be provided to a patient
newly diagnosed with eczema, with another set presented to a patient with
long-standing asthma.
• Using diagnosis ontologies to assist patients and further focus their
information searches [1].
• Linking PHG to the proposed common Electronic Patient Record System for
Wales [3].
• Investigation into a patient anonymisation facility, enabling individuals to
create an untraceable personal profile that can be used to participate in online
discussions, including the posting of potentially sensitive information. Due
to the ease in which individuals can often be traced from online discussion
forum postings, some may be dissuaded from seeking the help and support
that could potentially improve their situation, either physically or
emotionally. For example, a patient recently diagnosed with HIV may not
wish to partake in an online support group in case their employer finds out
about their condition.
• Investigation into the security issues relating to the transfer of personal
health details across the Internet. Individuals may be reluctant to access their
health records via a web browser if they have any doubt regarding its
security.
• Examination into the potential for incorporating other developments, such as
those made during the PIGLET [8] project, into the PHG.
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