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"Please Do Not Confuse Your Google Search With My Medical Degree"? - How Accessing Electronic Health Records (EHRs) and Online Searches can Support Information Needs and Increase Understanding for Patients and Relatives

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Patients' use of eHealth services and other online sources to identify medical information has become increasingly popular. For many patients the Web is an important source where they can find information and advice about symptoms and treatments. The majority of patients sees the information on the Web as reliable and uses it to influence their healthcare. Healthcare professionals on the other hand remain skeptical about the advantages of the Web as a source of medical information for the layperson. Physicians have raised concerns about patients using online sources to find information about their health as they can misinterpret or misuse information. This can occur because patients may have inadequate health literacy and eHealth literacy or are not able to distinguish accurate from inaccurate sources. The aim of this position paper is to outline a critical incident that illustrates the patient perspective of searching medical information online in relation to the eHealth service Journalen where patients and relatives in Sweden can access their electronic health record online. The critical incident is based on a true story and describes how Steve received his cancer diagnosis, and how his wife Tina sought information on the Web to learn more about his condition. The case illustrates how reading the electronic health record and looking online for further information can improve patients' understanding of their medical condition and empower them to make health decisions.
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"Please Do Not Confuse Your Google Search With My
Medical Degree"?
How Accessing Electronic Health Records (EHRs) and Online Searches can
Support Information Needs and Increase Understanding for Patients and Relatives
Hanife Rexhepi
University of Skövde
Skövde, Sweden
hanife.rexhepi@his.se
Christiane Grünloh
KTH Royal Institute of
Technology
Stockholm, Sweden
TH Köln
Gummersbach, Germany
grunloh@kth.se
Åsa Cajander
Uppsala University
Uppsala, Sweden
asa.cajander@it.uu.se
Isabella Scandurra
Örebro University School of
Business
Örebro, Sweden
isabella.scandurra@ oru.se
ABSTRACT
Patients’ use of eHealth services and other online sources to
identify medical information has become increasingly popu-
lar. For many patients the Web is an important source where
they can find information and advice about symptoms and
treatments. The majority of patients sees the information on
the Web as reliable and uses it to influence their healthcare.
Healthcare professionals on the other hand remain skeptical
about the advantages of the Web as a source of medical in-
formation for the layperson. Physicians have raised concerns
about patients using online sources to find information about
their health as they can misinterpret or misuse information.
This can occur because patients may have inadequate health
literacy and eHealth literacy or are not able to distinguish
accurate from inaccurate sources. The aim of this position
paper is to outline a critical incident that illustrates the pa-
tient perspective of searching medical information online in
relation to the eHealth service Journalen where patients and
relatives in Sweden can access their electronic health record
online. The critical incident is based on a true story and de-
scribes how Steve received his cancer diagnosis, and how his
wife Tina sought information on the Web to learn more about
his condition. The case illustrates how reading the electronic
health record and looking online for further information can
improve patients’ understanding of their medical condition
and empower them to make health decisions.
Copyright held by the authors.
NordiCHI ’16, October 23–27, 2016, Gothenburg, Sweden.
Workshop on "Designing eHealth Services for Patients and Relatives:
Critical Incidents and Lessons to Learn"
ACM Classification Keywords
H.5.m. Information Interfaces and Presentation (e.g. HCI):
Miscellaneous; J.3 Health; J.3 Life and Medical Sciences:
medical information systems
Author Keywords
Electronic health record; Online search; Information needs;
Patient Empowerment; Health Literacy; Patient Education
INTRODUCTION
There is a rise in the use of information and communica-
tion technology (ICT) by consumers in relation to health and
medicine. People are making use of medical devices for self-
managing their disease, using health apps for self-tracking,
online sources to inform themselves, and learn more about
their, or their next of kin’s, personal health conditions etc. The
availability of online resources has led to concerns in that it
can be difficult for people to identify the quality and validity
of the information. Some healthcare professionals (HCPs)
expressed their disapproval about patients "googling" their
symptoms, exemplified in a picture of a mug which went viral
in social media, urging that one should not confuse a google
search with a medical degree [13]. The individual’s risk of
encountering misinformation online has been described as a
function of the proportion of inadequate information on the
Web and the inability of the individual (or his/her tools) to
filter the inadequate sites [8]. This can be challenging for the
HCPs, who may be faced with patients’ search results which
need to be analysed and possibly refuted towards the patient
[13]. A similar concern of patients not being able to compre-
hend and classify medical information is discovered in studies
related to patients accessing their electronic health records
(EHR) [10, 22].
1
However, the opportunity to access information about personal
health has been seen as an important precondition for patients
to make informed decisions about treatment options [19], and
can contribute to patient empowerment. Enabling the access
to health information is one important aspect in this context.
However, according to Norman & Skinner, engaging with
consumer eHealth requires a skill set (eHealth literacy), which
is the "ability to seek, find, understand, and appraise health
information from electronic sources and apply the knowledge
gained to addressing or solving a health problem" [17]. As
this has been described as an ongoing process rather than a
final state [17], it is possible that reading one’s own electronic
health record can contribute to the evolving nature of eHealth
literacy as well as improving the encounter with HCPs.
This position paper aims to outline a critical incident, in which
the Swedish eHealth service Journalen, in combination with
an online search, has been used by a patient and his relative
in order to satisfy urgent information needs. The incident is
based on a personal experience by one of the authors, and the
names have been changed for reasons of anonymity.
BACKGROUND
The eHealth Service Journalen
In 2012 Uppsala County Council implemented the eHealth
service Journalen which gives all patients over 18 years of
age the opportunity to access their electronic health record
online, sometimes referred to as a Patient Accessible Elec-
tronic Health Record (PAEHR), through a national eHealth
portal using e-ID [11]). Among other things, patients can see
a timeline as an overview of the health record, including med-
ical notes, diagnoses, test results etc. (Figure 1). Moreover,
patients can authorize relatives to access their records. The
implementation of the PAEHR sparked a critical debate about
potential negative consequences for the healthcare system in
general and for patients in particular [6], as many HCPs did
not think that the PAEHR is a good reform [21], nor did they
consider Journalen being an important service for the patients
[20]. Physicians were concerned that patients would not un-
derstand the medical language and reading the record would
lead to undue anxiety [10]. Furthermore they anticipated a
need to change their way of writing in a way appropriate and
comprehensible for laypeople [10]. Patients however did not
necessarily perceive the medical language as a problem in that
they still felt to have a comprehensive understanding of the
content, even if some parts were difficult to understand [19].
Another concern of physicians was related to how patients
were informed about "bad news", which has been defined pre-
viously as "any information which adversely and seriously
affects an individual’s view of his or her future" [Buckman
1992, as cited in [5]]. When patients are given access to health
information through Journalen it also means that they can
read the "bad news" about their illness on their own, probably
before having discussed this with a HCP, which physicians per-
ceived as inferior compared to the way they had been trained
[10].
The implementation of Journalen has been much debated in
Swedish media and recently caught public attention again.
After several rulings of different courts, the Data Inspection
Figure 1. Screenshot of Journalen showing the timeline of the health
record.
Board appealed to the Supreme Court to remove the functional-
ity called "Ombudsfunktionen" [18]. This functionality allows
patients to grant their relatives access to the EHR, including
notes, test results, referrals etc. and by this giving them the
opportunity to take part in the patient’s record using an own
login (i.e. the relative’s login). The Data Inspection Board
reviewed the PAEHR and concluded this to be against the law.
Uppsala county council disagreed, so that after some judicial
back and forth the case was brought to the Supreme Court
this summer [18]. Furthermore, the government has now been
asked to clarify the law in question - the Patient Data Act - in
order to allow relatives’ access to the record as a representative
for the patient [18].
Patient Empowerment and eHealth literacy
Studies have shown that giving patient and relatives online
access to medical information (e.g. their EHR) can improve
quality and safety of care, encourage them to participate in
their own care, increase understanding of their medical issues,
and improve doctor-patient communication [15, 16, 19]. This
is often denoted as patient empowerment. Patient empower-
ment describes a situation where the patient’s role is chang-
ing from a patronized patient to a patient that is informed,
2
autonomous and engaged in his or her own care [1]. Even
though patient empowerment has gained considerable impor-
tance, uncertainty remains about the best way to define and
measure it [3]. However, a common view among researchers
is that patient empowerment is the enhanced ability of patients
to actively understand and influence their health status, where
information is seen as key to patient empowerment. Access
to information can contribute to increased knowledge and
knowledge can in turn help the patient and their families to en-
gage in meaningful discussions or make thoughtful decisions
regarding medical care [4, 9, 23].
The emergence of the personal computer and the World Wilde
Web has dramatically increased patients’ ease of access to
health information [4]. ICT such as different eHealth solu-
tions can empower patients by providing them with easy ac-
cess to health information and by providing a mechanism for
electronic communication with HCPs and the healthcare sys-
tem. ICT has thus the potential to reframe traditional power
relationships by promoting information sharing and shared
decision making. Nevertheless, eHealth solutions provide lit-
tle value if the intended users lack a skill set, or literacy, to
effectively engage [17]. eHealth literacy regards ability to
seek, find, understand, and appraise health information from
electronic sources such as EHR and to apply the information
and knowledge gained to addressing or solving a health prob-
lem [17]. Among other things, eHealth literacy is influenced
by a person’s current health status and motivation for seek-
ing information, and requires basic reading and writing skills,
working knowledge of computers, a basic understanding of
science, and an appreciation of the social context that medi-
ates how online health information is produced, transmitted,
and received [17]. Furthermore, it has been emphasised that
eHealth literacy is not static, but a competence that evolves
over time as new technologies are introduced and the personal,
social, and environmental contexts change [17]. The use of
ICT can contribute to the evolving nature of eHealth literacy,
however ICT tools should be viewed in the light of the skills
required for people to use them [17]. Suitable ICT together
with support by HCPs can therefore help the patient to become
empowered.
CRITICAL INCIDENT
Steve is an active and fit man, but a few weeks prior to the
incident, he discovered a lump at his throat. He has never been
at the hospital before, never had surgery, and never been ill so
the situation feels completely new to him. His wife Tina works
in academia, but not in a medical area. She uses ICT in her
work and is an early adopter of most ICT-related technology
and apps such as e.g. Pokémon GO. She is aware of the lump,
but like Steve, she does not expect the condition to be serious,
therefore Steve goes to the hospital alone.
This day, Steve visits the ear, nose, and throat (ENT) specialist,
who looks Steve in the eyes and says:
"Since you have cancer we need to do a surgery to know
more."
Steve looks back at the doctor and his mind is completely
blank. He had no idea that he has cancer. He thought that the
doctor’s appointment was to check up on that lump he had
found. He also remembers that the primary care physician
called him last week to say that all blood tests were normal,
and that there was nothing to worry about. All Steve knew was
that the primary care unit had sent a referral to the hospital
regarding the lump after his last visit. Steve is therefore com-
pletely unprepared for this new situation, and a few minutes
later he understands that the ENT specialist is convinced that
he has lymphoma. Instead of a simple check-up, this visit
will be about describing the surgery that will be performed
the following week, including the procedures, the possible
complications, and the stay at the hospital. The ENT specialist
also takes a biopsy from the lump and says that the results will
be back in a few days.
The physician tries to joke about the whole situation, but the
joke falls a bit flat and feels inappropriate.
"There is no need to throw in the towel."
On his way from the doctor’s appointment Steve calls his wife
and tells her about the new situation. A few days later the
specialist calls back again, this time with the test results which
indicates another kind of cancer, but the surgery will be the
same. Steve sends a short text message to his wife Tina:
"They say it’s definitely a tumour."
Tina stares at her phone and her mind goes blank. "Tumour?",
she thinks, and quickly replies:
"What does that mean?"
She gets no answer, and then remembers that she can read the
electronically available medical notes and test results of her
husband, so she sits down in front of the computer and enters
the eHealth service using her e-ID. The pulse banging in her
head. After entering the PAEHR Journalen she starts looking
for the information from today’s doctor’s appointment and at
the same time she gets an answer from her husband saying:
"They will need to do surgery to know more."
Suddenly the diagnosis is there on the computer screen:
Little differentiated squamous cell carcinoma
[Lågdifferentierad skivepitelcancer]
Tina feels a bit relieved. The wording "little" doesn’t sound too
bad, and she does a Google search on the quotation only to find
out that her first guess was completely wrong. In this context
"little" refers to the degree of the tumour’s differentiation
and describes how much it resembles to healthy tissue. A
"little differentiated" type of cancer is more aggressive than a
medium or high differentiated cancer.
A few hours later Tina looks up from the screen after having
googled excessively. Now she has a better idea of what kind
of cancer her husband has, and also what kind of treatments
other people have gotten when diagnosed with this cancer. She
has skimmed everything she can find from trusted healthcare
providers’ pages to blog posts and Facebook groups. She
realises that some of the information that she has read is prob-
ably incorrect, and she has insufficient healthcare knowledge
to understand everything. However, she now understands
3
much better why the doctors need to do a surgery in order to
know more about her husband’s condition. When her husband
comes home, they start talking about what the doctor said,
and compare it with the information Tina has found in her
online search based on the words in Steve’s EHR. Together
they create a scattered understanding of the disease based on
the different pieces of information. However, when talking
about the information she found, Tina did not remember ex-
actly what information came from which source, as she did
not make detailed notes and her memory got a bit blurred.
ASSUMPTIONS AND CONSEQUENCES
In this section we will outline the assumptions that lay behind
the described incident, the idea of patients accessing their
EHR, and patients searching the Web for additional informa-
tion.
Breaking Bad News
In the beginning of the incident it is revealed to Steve by
accident that he has been diagnosed with cancer. The ENT
specialist that Steve met, was unaware that his patient had not
been informed previously. This exemplifies that how physi-
cians perceive the act of "breaking bad news" (e.g. in [10]), is
not always the way how a patient actually receives informa-
tion. Physicians have criticized the introduction of Journalen
because it would interfere with their workflow of breaking bad
news; i.e. first, all test results are gathered, second, results are
interpreted and discussed by HCPs, and third, the final diag-
nosis is revealed and explained to the patient in person [10].
Leaving aside that the news on having cancer was revealed to
Steve by accident, he received his results and final diagnosis
in several steps, none of which resembles the "ideal" process
that physicians might have in mind regarding how a patient is
informed about a cancer diagnosis.
It is unquestionable far from ideal that patients might learn
about a cancer diagnosis off-guard by reading their online
EHR. However, even without using eHealth services, how pa-
tients are actually informed about a serious disease might not
resemble established protocols for breaking bad news either.
For example, the six-step-protocol SPIKES includes among
other things the assessment of the patient’s perception in order
to "create a reasonably accurate picture" and possibly correct
misinformation [2]. Two example questions are given in the
protocol [2], which can be related to the above incident: What
have you been told about your medical situation so far? What
is your understanding of the reasons we did the MRI? As the
incident shows, Steve’s perception was significantly different
and he had no idea that his medical situation was serious. Also
the perception of the medical procedure and its intention was
inaccurate. The ENT explained for example the procedure
of the upcoming surgery, which from the HCPs’ view served
as a diagnostic tool to learn more about the specific tumour
in question. This differed from the general understanding by
Steve and Tina, who viewed "operating on a tumour" as a
therapeutic measure.
Thus, introducing an eHealth service like Journalen that gives
people access to their EHR is not necessarily to be blamed
for "breaking bad news" being a difficult endeavour. Breaking
bad news is very difficult as it is for both patients and also
HCPs (see e.g. description in [5]). However, accessing their
EHRs can help patients and relatives to cope with the news,
re-read at home what has been discussed during the face-to-
face meeting, and inform themselves further on their condition.
Journalen may, on the contrary, even be used to improve a
difficult situation in that it could be used to involve patient in
their care and also for further communication between HCPs
and the patient/relative. Thus we argue that PAEHRs could
be designed and used to facilitate patient involvement, which
could increase the quality of care. The latter is in accordance
to Dias et al who conclude: "The way in which patients are
involved in their care and the way in which oncologists elicit
and impart information contribute to the quality of patient
treatment." [5]
eHealth Literacy
Concerns have been expressed that patients do not understand
the medical terms in the EHR and thus reading the record
would lead to undue anxiety. In the described incident, Tina’s
anxiety arose rather through receiving an inconclusive text
message from her husband, combined with her having to wait
for a response. In order to feel some kind of "being in control"
and also perhaps as some kind of coping mechanism, Tina
looked for the missing information herself by reading the EHR
online. She did not understand the medical terms and her first
interpretation proved to be wrong. However, by combining
the medical information from the EHR with an online search,
she was able to receive information directly, learn more about
the diagnosis, and also to make sense of the short text message
(i.e. why a surgery is necessary for diagnostics). As it turned
out, she also received more information than Steven did during
the discussion in that she learned about different treatments.
By reading this, she felt more prepared for what she and her
husband might have to face in the near future. Thus, while
eHealth literacy might be considered by some as a precondition
to make use of the EHR, reading the EHR can contribute to
eHealth literacy in providing a starting point for an online
search.
Quality of Information
An assumption behind the critique of patients looking online
for health and medical information is that information on the
Web might be wrong or misleading and that patients might not
be able to identify unreliable content. In the critical incident,
Tina was aware of differences in quality and validity while
reading, e.g. she did not consider information on blogs as
reliable. It can be assumed, that Tina’s academic background
equipped her with the skills to identify reliable sources. How-
ever, as described in the incident, a while after her excessive
online search, her memory was blurry regarding which infor-
mation came from which source. Thus, in hindsight all these
newly processed information might blend together. This might
especially be the case in exceptional situations like the one
Tina experienced, in which the emotional aspect might have
influenced the memory as well.
Relatives and Patient Data Act
The current debate about the functionality of Journalen where
patients can give relatives the authorization to access their
4
EHR evolves around legal aspects such as whether this is in
accordance with the Patient Data Act. It has happened before
that the research project preceding Journalen was considered
to be against Swedish law [6]. Back in 2004 patient digital
access to healthcare information was illegal, which changed
due to the introduction of the aforementioned Patient Data
Act. After this act came into force in 2008, it became legal for
patients to digitally access their own healthcare information
[6]. It is not our intention to discuss the legal implications of
the specific law. However, we want to point out, that similar
to the previous situation, this law may also have to change
in order to reflect current needs of society. The functionality
seems to be much appreciated by relatives and patients, who
otherwise might just find a workaround by e.g. sharing their
own login-data instead of authorizing the relatives to access
the patient’s EHR with their own login.
DISCUSSION AND CONCLUSION
The communication between healthcare providers and patients
and relatives is accompanied by many barriers and struggles
(as discussed e.g. in [5, 12]). All participants are emotionally
burdened when it comes to the disclosure of having a serious
disease. Special attention should be paid to the whole health-
care process in order to avoid patients being caught off-guard,
e.g. by informing them in advance about tests that are sup-
posed to rule out a specific diagnosis, so that they are able
to make a deliberate decision whether they want to log into
their EHR or not. This way of preparing a patient about the
possibility has also been discussed by a Swedish physician in
that by taking the time to explain the intentions of the tests,
the patient would then be involved from the start and could
also start processing the possibility of having e.g. cancer [14].
While concerns have been raised that laypeople may not un-
derstand medical terms in the EHR, the incident could also
show how one can make use of the medical terms in order to
look for more information. By performing an online search
using the medical terms, Tina could educate herself about her
husband’s medical condition and felt better prepared to talk
about it with him and also with the HCPs afterwards. This
helped her to cope with the exceptional situation. A translation
of EHRs into a language specifically tailored for laypeople
would not only increase the HCPs’ workload, but might also
prevent patients from learning the medical terminology, which
otherwise could increase their eHealth literacy. To learn the
language of healthcare is especially useful for patients with
chronic diseases who are already engaged in self-management.
However, it cannot be assumed that reading the EHR is helpful
for everybody, that all patients are interested in or motivated to
look for further information (instead of being satisfied with the
first interpretation, e.g. that "little" is something positive), and
equally equipped to distinguish between reliable and unreli-
able sources. Research has shown that some cancer patients do
not want to read or know anything about their disease, and that
they prefer not to be informed at all [19]. In addition, along
with Tina’s description of her blurred memory, it has been
reported in another study that "very few internet users later
remember from which websites they retrieved information or
who stood behind the sites" [7].
An improvement for the future could be to support patients
in developing an understanding of the medical text. Similar
to connecting and linking the medication entries in the EHR
to FASS (Farmaceutiska Specialiteter i Sverige, the Swedish
national formulary database), medical terms of the diagnoses
and treatment options could be linked to a similar database
with reliable information. A function like this implemented
in the eHealth service might prevent patients in some cases
from reading unreliable information. Exposing patients to
reliable and highly valuable information through different ICT
solutions, is however not enough. It is also necessary to have
an interaction between HCPs and patients. According to the
Swedish National Board of Health and Welfare HCPs should
not assume that patients are not searching for information
online about their diagnoses [24]. Instead, they should have
an open dialogue about online information and, if necessary,
guide patients to quality-assured information on the Web.
Looking online for information is not without drawbacks, but
instead of discouraging patients and relatives to involve them-
selves by using the rather condescending phrase like the one
we referred to in our title ("Please Do Not Confuse Your
Google Search With My Medical Degree"), we wanted to
highlight some of the opportunities and possible ways for-
ward.
ACKNOWLEDGMENTS
The authors want to thank "Steve" for the permission to use
this critical incident in the paper. Current research is part of
the DOME consortium, and the work has benefited from dis-
cussions with other researchers in DOME. We are also thank-
ful for time, support, and access granted by SUSTAINS, co-
funded by the European Commission and the Uppsala county
council, Sweden.
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