=Paper=
{{Paper
|id=Vol-1574/paper8
|storemode=property
|title=Exploring Online Health Information Seeking in Scotland
|pdfUrl=https://ceur-ws.org/Vol-1574/paper8.pdf
|volume=Vol-1574
|authors=Julia Moreland,Tara French,Grant Cumming
|dblpUrl=https://dblp.org/rec/conf/pahi/MorelandFC15
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==Exploring Online Health Information Seeking in Scotland ==
https://ceur-ws.org/Vol-1574/paper8.pdf
Exploring Online Health Information Seeking in Scotland
Julia Moreland1, Tara French1,2, Grant Cumming1,3,4
1
University of the Highlands and Islands,
Moray College, Elgin, United Kingdom
2
Digital Health and Care Institute, Institute of Design Innovation,
The Glasgow School of Art, United Kingdom
3
University of Aberdeen, Aberdeen, United Kingdom
4
National Health Service (NHS) Grampian, Elgin, United Kingdom
Abstract. Online Health Information Seeking (OHIS) has become an area of
increasing interest over the last decade. The Internet has enabled the
democratisation of health information as knowledge which was previously
exclusive to health professionals has now become open access for all. The
activity of OHIS has also revealed a digital divide in terms of those who access
the Internet for health information. The prevalence of OHIS and the impact it
has on patient outcomes and the relationship between health professional and
patient is the focus of an on-going body of research outlined in this paper.
1 Introduction
Health information which is available online is changing how patients interact with
health professionals. Much research focuses on the minefield of unregulated
information and the impact this has on patient outcomes, positive and negative.
However, it is vital to consider the impact on the health professional as this
information has the potential to alter the relationship between patient and health
professional as the patient becomes more empowered through OHIS. Recruitment of
health professionals is in crisis. Short consultations and the changing landscape of
healthcare have reduced the attractiveness of frontline healthcare [1].
In a recently published National Framework, The Scottish Government [2]
encourages digital participation at a local level in the hope that the Scottish people are
presented with the opportunity to benefit from the wide range of information, goods,
and services accessed via the Internet. The particular focus is on improving digital
participation among groups who are less likely to access the Internet, the elderly and
low-income households [3]. These groups stand to benefit most from reduced-price
goods and other benefits, which the Internet can provide. Internet use at home has
been steadily increasing in Scotland. From 2007 to 2013 the percentage of adults
accessing the Internet for personal use has risen 17.1 points (62.7% in 2007 to 79.8%
in 2013) [3]. This compares with a 15-point increase of Internet use among adults in
the United States for the same period (71% in 2007 to 86% in 2013) [4]. The increase
in internet use at home results in people being able to engage in a range of online
activities, potentially impacting on people’s lives. Information available which relates
Copyright © 2016 by the paper's authors. Copying permitted for private and academic purposes.
In: G. Cumming, T. French, H. Gilstad, M.G. Jaatun, E.A A. Jaatun (eds.):
Proceedings of the 3rd European Workshop on Practical Aspects of Health Informatics
(PAHI 2015), Elgin, Scotland, UK, 27-OCT-2015, published at http://ceur-ws.org
74
to health and well-being is one area in which the Internet is becoming increasingly
important.
Scotland has a health service that is free at the point of need. As the population
increases, the health of the nation continues to be an area of concern for the Scottish
Government and the National Health Service (NHS) in Scotland. Internet use has
enabled patients to access search engines, online symptom checkers, and health
information sites to contribute to positive health outcomes for themselves or a loved
one. This digitally literate population is described as "health seekers" [5].
Patient OHIS is not intended to replace physician care but to support it as health
professionals also seek information online during a consultation as they include
patients in the diagnostic process [6]. However, OHIS and user contributed health
information is encouraging patients not to adhere to physician advice [7], to which
health care professionals must adapt [8]. The online health seeker expects
convenience, to be a partner in decision-making, and almost instant service in all
aspects of their health care [9]. However, the health seeker must pass through a series
of complex processes in order to access and utilise health information [10]. Barriers in
language, information and communication technologies (ICTs) knowledge, or the
ability to weigh up sources and formulate a reasoned perspective can all limit the
positive outcomes of health seeking online. Trust has also been identified as a key
barrier to improving the online health information-seeking experience [11].
Online Health seekers differ from offline health seekers by age, income and
education [12]. Those accessing health information online are affluent, well-educated
adults [13]. These differences are known as the digital divide [14-16]. Therefore
issues surrounding the digital divide, focusing on eHealth literacy, are also important.
By identifying patient OHIS activities, the needs of the patient can be further
understood. Technology has provided access to previously exclusive information and
therefore it is important that the health professional be aware of how this information
could potentially influence patient decisions. Knowledge of patient OHIS must be
based on empirical data that is specific to the time and cultural context.
2 The Prevalence of Online Health Information Seeking in
Scotland
Generating a baseline of the prevalence of OHIS among Scottish patients provides an
important starting point in understanding how OHIS impacts healthcare. It is not
necessarily appropriate to rely on data from secondary sources, other cultures or
general Internet use surveys. To investigate this, an exploratory study of online health
seeking behaviour in Scotland identified the number of patients who were influenced
to seek further medical advice offline as a result of online health information seeking
[19]. The attitudes patients have towards this information were also identified.
The study involved a convenience sample of 571 patients who responded to a
self-completed questionnaire based on the Pew Internet and American Life Project
[4]. Responses were predominantly on a nominal scale. Data were analysed using
Statistical Package for the Social Sciences (SPSS). Findings revealed a total of 68.4%
(379/554) of patients had previously used the Internet to acquire health information. A
75
total of 25.4% (136/536) of patients consulted the Internet for health information
regarding their current appointment on the day surveyed; 34.6% (47/136) of these
patients were influenced to attend their appointment as a result of that online health
information. With reference to the impact of the information on their health 43.2%
(207/479) of patients stated the health information helped improve their health and
67.1% (290/432) indicated that they had learned something new. A total of 34.0%
(146/430) of patients talked to a health professional about the information they had
found and 90.0% (376/418) reported that the information was useful. In total, 70.4%
(145/206) of patients were concerned about obtaining health information online from
reliable sources. A total of 67.1% (139/207) of patients were concerned that a health
site may sell their personal information, yet only 6.7% (36/535) checked the privacy
policy of the site visited. However, 27.9% (55/197) of patients were not concerned
about their employer finding out what health sites they visited, whereas 37.5%
(78/208) were concerned that others would find out. The full study can be accessed
online [19].
3 The Power Exchange Between Health Professional and Patient
It is argued that OHIS has the potential to impact the interaction between patients and
health professionals [12, 19]. Specifically how, and to what degree this occurs is
unknown. Patients are engaging in OHIS to meet their personal health needs, but they
do not necessarily discuss this with a health professional [17-20]. In order to explore
this impact a pilot study, the second stage of this programme of research, was
developed in an attempt to identify how the democratisation of medical knowledge
through the Internet creates new levels of empowerment and agency for patients as
well as breaking down traditional barriers by shifting the balance of power from
health professional to patient. The health professional/patient relationship is
persistently asymmetrical [25]. The focus during this phase of the research is on the
health professional’s experience of OHIS.
Following ethical approval from NHS Grampian, a series of unstructured qualitative
interviews were conducted among health professionals (n=13). The focus of these
interviews was to identify issues encountered during a typical patient consultation in
relation to patient OHIS and the impact this has on the health professional. This was
an exploratory study seeking to identify themes that will inform subsequent research.
Therefore unstructured interviews were most appropriate as this method allows the
interviewee to direct the conversation [22] and results in less arbitrary interviewing
allowing the interviewee to tell their story [23, 24]. In this context this approach is
particularly apt as the health professionals were sharing privileged information about
their experiences with patients.
After an initial briefing and question the health professionals were given the
opportunity to elaborate with minimal contribution from the interviewer. No
confidential information was disclosed, however, this is a topic that some health
professionals may not be comfortable with. The question asked was ‘In the context of
a typical consultation, what is your experience of patient online health information
seeking?’
76
Interviews lasted approximately 20 minutes and were recorded using a dictaphone.
The recordings were later transcribed and imported into Nvivo as word documents. A
conceptual framework analysis, as proposed by Miles and Huberman [23], was
conducted using Nvivo in order to identify themes of power and efficacy in relation to
patient and health professional interaction around OHIS. Miles and Huberman [ibid]
recommend reducing the data, displaying the data and then drawing conclusions.
This process was followed and the data were reduced by extracting relevant sentences
and pasting them into a new document [26]. Themes were identified relating to; time
spent discussing online health information; tension experienced during this process;
trust in the health professional over the information; terminology as patients lacked
digital or health literacy; and finally trouble when confrontation can occur.
3.1 Preliminary Findings
Preliminary analysis of the interview data indicated that most health professionals see
the merits of increased patient OHIS. They largely accepted this as a part of their
consultation process. Respondent 2 stated:
“Doctors attune themselves wherever they are to their circumstances and I am sure
that people working in that environment are good at dealing with that” (R2)
However, some health professionals felt undermined by patients who present
information during consultations that they found on the Internet. Trust was a key
concept here:
“...quite a few times there have been minor symptoms which patients interpret online.
Quite difficult for me to shake off as it often feels like patients think we are
contradicting online information. Sometimes there is a lack of trust” (R5)
“People have extraordinary faith in the information they find on the Internet” (R6)
“…frustrated with patients who are difficult to convince.” (R5)
“…frustrating…can lead to conflict in the consultation. No trust or respect” (R3)
On the other hand respondent 1 stated the following:
“I have been here quite some time so I have quite a good relationship with some of
the patients so it may be that they are trustworthy of your opinion and so if I say ‘I
don’t think it is that and here is why’, then that is fine” (R1)
Although OHIS is seen as a largely positive activity, it is clear from the interview
data that most health professionals spend some portion of a consultation discussing
online health information. Existing research indicates that information presented
during consultations as a result of patient OHIS can result in longer consultations
[17]. In addition health professionals are often presented with information that they
do not know themselves [17]. Health professionals indicated that they often search
77
for appropriate sources of information with a patient during a consultation. The
following extracts highlight this:
“Sometimes patients bring data that you have no idea about…I have just been honest
about that and tried to educate myself about that” (R5)
“Patient needs are diverse and therefore treatments equally so. In this sense a
snapshot of [OHI] is not particularly helpful and it serves to confuse rather than help.
Therefore time is spent fixing this during a consultation” (R6)
“…appointments are longer than 10 years ago as information giving is now built into
consultation” (R6)
“…spend a long time persuading someone that they do not have something” (R3)
“…in a large % of consultations I will go online with the patient and point out a
website that might be useful to them and ask them to go away and look at it and then
come back” (R1)
Some respondents indicated a concern for the type of information patients were
accessing and highlighted this as a potential cause of conflict in the consultation:
“The other kind of internet behaviour I would be very cautious about is the patient
forum. It tends to be people with undiagnosed medical problems and they get onto
forums and convince themselves they have something and they want a label for it and
some of these things can be a bit toxic really and can cause difficulty ” (R2)
“…they [patients] come armed...” (R6)
Further to this, concern was expressed about patient ability to interpret appropriate
information and actually possess the relevant level of literacy to understand it:
“…multi-disciplinary input for a patient...they come to you with almost an
information overload. When problems are so complex the Internet stops being helpful
at that point” (R1)
“The question usually is do I have this thing rather than what is thing. Pointing out
reliable sources – forums are a problem and patients can think they have a side effect
and join with collective in thinking they have it” (R5)
These preliminary findings support current discussion in the field of health
communication and highlights the need for improvements in how health professionals
mediate patient OHIS [17, 18, 20, 21].
78
4 eHealth Literacy: A Comparative Approach
Preliminary findings from the exploratory study outlined above indicate that digital
health literacy is a concern for health professionals and patients alike [18, 20]. In
general digital literacy is an issue that presents access issues for general Internet users
across various socio-economic groups. This digital divide highlights certain
characteristics that predispose affluent groups to enhanced digital literacy skills.
When complex medical terminology is added to this in an OHIS context, the problem
of access to health information via the Internet is further compounded [16].
Finland and Scotland are often identified as sharing certain social and health
characteristics. With populations of similar size, comparison between the two in
regards to digital health literacy is an interesting prospect. The authors and a partner
in the University of Oulu, Finland, are to investigate levels of digital health literacy
among patient populations, in a comparative study.
5 Conclusion
The impact of OHIS on health professionals and patients is a multi-dimensional issue
that needs to be understood at the macro and micro level. Patient experience appears
to be held above the plight of the health professional as the digital culture brings Dr
Google further into the consultation space. The findings at this stage of this
programme of work suggest that online health information-seeking behaviour
influences offline health-related behaviour among the population surveyed.
The first study in the series provides support for the growing phenomenon of
an empowered, computer-literate, health information consumer, and the impact of this
phenomenon must be considered in the context of the patient-health professional
dynamic. Patient attitudes to online health information seeking were focused on
issues relating to trust, reliability, privacy, and confidentiality. This study provided a
baseline of the prevalence of online health information seeking in the Grampian
region of Scotland.
Preliminary findings from the second study, which focuses on the experience
of health professionals in relation to patient OHIS, has shown that health
professionals are adjusting their consultation style and spending time justifying
diagnoses and treatment options as a result of patient OHIS.
Patient experience is not to be overlooked in this context, however, this
particular topic has received much attention within the field across cultural, social and
economic divides. It is important to conduct a Scotland specific study as assumptions
of a universal experience should not be made. Therefore a further qualitative study
will be conducted identifying the patient experience of presenting information found
online during a consultation. By continuing this programme of work the authors
strive to contribute to the overall understanding of the impact of OHIS on healthcare.
Acknowledgments We would like to acknowledge the support of Moray College
UHI and NHS Grampian in this programme of work.
79
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