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Why don’t we trust health websites that help us help each other?

Authors:
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Why don’t we trust health websites that help us help each
other? An analysis of online peer-to-peer healthcare
Elizabeth Sillence, Claire Hardy, Pam Briggs
Northumbria University
Newcastle upon Tyne
NE2 1NR
p.briggs@northumbria.ac.uk
ABSTRACT
Shared patient experience (PEx) has become common on
the medical Internet and is a potentially valuable source of
health information and advice, but little is known about
how we choose to incorporate PEx in our information
gathering and health decision-making. An online
questionnaire revealed a paradox: patients like PEx and are
drawn to sites containing PEx, but are then less likely to
trust the information and advice they find there. Subsequent
analysis suggests that this paradox may be related to the
prevalence of advertising as a funding-model for online
patient communities. To better understand these issues we
explored one health domain (smoking cessation) in greater
depth, inviting participants to search for relevant material
and then discuss the different kinds of patient experience
they found online. We report on the selection and rejection
factors involved in choosing sites containing PEx and
explore the notion of credible design in this space.
Author Keywords
eHealth, health informatics, trust, credibility, advertising,
health, patient experience, patient communities, smoking
cessation
ACM Classification Keywords
H.5.3 User Interfaces, web-based interaction
H.3.3. Information Search and Retrieval
H.3.5 Online Information Services, Web-based.
General Terms
Human Factors; Design
INTRODUCTION
We have transformed our understanding of how patients use
the internet for health decision-making and support over the
past decade. At the turn of the century the received wisdom
was that patients would primarily seek-out a professional,
authoritative source for health information and advice as a
means to prepare themselves for a future consultation.
However, by 2007 with the rise of user-led content, it was
clear that people sought more than a physician opinion
online and were becoming heavily influenced in their health
decision-making by other, like-minded patients. Recent
reports of health behaviors have shown a remarkable rise in
the number of people seeking support and advice from their
online peers, with an estimate that one in four Internet users
living with a chronic condition, such as high blood
pressure, diabetes, heart or lung problems, or cancer, seek
others with similar health concerns online [1]
The process of finding „like-minded others‟ online has
become relatively straightforward, as patient communities
have grown around almost every known health condition.
This means that patients can now easily source their health
information, support and advice from fellow patients [2].
But this raises a new set of questions for those involved in
the design of health websites: Are patients explicitly drawn
to those websites that offer patient experience (PEx) and if
so, how readily do they trust the information and advice
they find there? Is the patient voice likely to carry more
weight than the healthcare professional? In this paper we
address these questions and make five contributions:
Firstly, following an online survey, we provide an up to
date snapshot of the most popular health websites returned
in online searches. Note, that this is in terms of their
reported consultation with web material as opposed to
simply sourcing data on site visits. Secondly, we document
the kinds of PEx associated with these sites. Thirdly, we
reveal a paradox: patients like PEx and are drawn to sites
containing PEx, but are then less likely to trust the
information and advice they find there. Fourthly, we report
on the prevalence of advertising as a funding model for
many peer-to-peer health communities and show, following
a series of focus groups, why this might present a real
problem for these communities. Finally, we summarize
those design factors likely to influence the perceived
credibility of PEx.
Background
Most Internet users have conducted health-related searches
online [3,4,5] many as a specific aid to decision-making or
as a means of preparing for a consultation with a physician,
but some simply as a means of accessing information and
support [6,7,8,9,10]. Increasingly, these searches are
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returning large amounts of patient-authored content, much
of it capturing patients‟ own experiences of different health
conditions or procedures [11,12,13]. The nature of these
experiences can vary widely, not only because the message
itself can take different forms, but also because the medium
is highly variable. It is, for example, possible to source
graphic and highly emotive patient narratives, describing,
say, a long-term stay in hospital, just as it is possible to
source short patient responses to a health question via a
forum or collection of tweets. A number of health
professionals have proposed that these patient contributions
should complement professional knowledge [14, 15] as they
may offer additional health benefits. It has been argued, for
example, that honest patient narratives may support
accurate decision making [16, 17] or may help patients
come to terms with longer term health conditions,
improving their adjustment to the disease [18].
Ziebland & Wyke [19] have argued that access to patients‟
stories can help promote positive behavior change,
potentially increasing the use of health services and
improving patients‟ ability to visualize outcomes and
realize more fully the implications of their illness or health
condition. They discuss the role of online PEx in terms of
seven activities: (1) finding information, (2) feeling
supported, (3) maintaining relationships with others, (4)
experiencing health services, (5) learning to relate the story,
(6) visualizing disease, and (7) affecting behavior.
The story is not entirely positive: Some authors report
concerns that some online testimony contains very strong
emotional content that can be off-putting and is not always
directly relevant [19] while others argue that an increasing
sense of isolation could derive from the belief that only
those who have personally dealt with the condition could
possible know what it feels like [20]. Finally, the quality
and credibility of online patient experiences are highly
variable, with some testimonies explicitly included for
commercial gain, so there are interesting issues here about
how users decide to trust the information and advice they
are offered by others.
In this study, we report the results of a survey that asks
patients to report their experiences of the last time they
went online for information and advice. Questions
pertaining to the availability and quality of patient
experience were included as well as questions concerning
the design and credibility of the site visited. This survey is
the third in series of three, undertaken every five years in
order to explore changing patterns of health information
[21]. The explicit inclusion of patient experience here was
prompted in part by the finding, in the previous survey, that
the presence of some kind of patient voice was influential in
persuading users to follow the advice they found online.
However, it was also prompted by a recognizable shift in
the kind of patient experience becoming available online.
The rise of blogging, life-logging and social disclosure
through networks of various kinds has been labeled in terms
of the development of a new kind of „personal health
informatics‟ [22]. Certainly, studies published over the last
two years have shown how different patient communities
have grown with the explicit aim of offering help and
support to their peers. This was reflected in the 2010 Pew
Internet survey [1], which reported extensive patient-to-
patient help among people living with chronic conditions.
For people living with diabetes or high blood pressure for
example the need to share stories was found to be a driver
of health related Internet use. It was also reflected in a
series of studies exploring how people seek mental health
information online e.g. [23, 24] where people said that one
of their prime motivations for going online was to find
experiential information from others with similar problems.
These patients typically reported increased hope on finding
others that had shown good recovery and also reported
taking comfort in knowing that they were not alone.
STUDY 1
Method
An Internet survey was designed as a development of two
earlier eHealth investigations [25, 26], in which people with
a range of health concerns were asked to describe their
experience of a health site used recently. The survey was
promoted on the hungersite.com website, a site which
makes a donation to the UN World Food Program for each
click-through. The URL for the questionnaire was also
submitted to Yahoo and distributed to local print media.
Participants were asked whether they had sought advice
online about health. Those responding yes were asked
about previous searches and their reasons for searching
online, as well as demographic information including age,
gender, Internet experience, education and location,
elements of which is captured in Table 1, below.
Age
18-24
25-35
36-44
45-54
55-64
65+
8%
17%
12%
20%
27%
14%
Highest level
of Education
High school
College
University
Postgraduate
17%
27%
27%
29%
Location
USA
Canada
UK
61%
3%
23%
Table 1: Demographic data for the questionnaire study
Participants were then asked about the nature of one
specific website, describing its content and the presence or
absence of any PEx before completing a set of five point
Likert scales that captured attitudes to the site.
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Results
The questionnaire data was cleaned to remove incomplete
responses. Items reporting attitude to the online material
was subject to a factor analysis which revealed a three
factor structure. These factors were then entered into a
hierarchical regression to see which if any factors predicted
patients liking of and trust in the websites and also which
predicted intention to change behavior.
Factor Analysis
A factor analysis of the items describing the web materials
and patients responses to that material revealed three
factors:
Factor 1 (=.92), labelled patient experience brought
together items mainly describing the importance of tailored
information and the ability to Interact with “like minded
people” on the Web site. Specific items grouped under this
factor were:
The site offered powerful accounts of health experiences
The site contained accounts of other peoples
experiences
It felt like the advice was tailored to me personally
On the site I was offered the chance to see experiences
from people just like me
The site contained contributions from like minded
people
I was able to contribute to content on the site
Factor 2 ( = .85), labelled impartiality, brought together
items describing the extent to which the advice on the Web
site appeared impartial and objective:
The site told me most of what I would I need to know
The advice was offered in my best interests
The advice seemed objective i.e. no hidden agenda
The site helped me understand the issue better
The site was free from adverts
The advice was impartial and independent
The reasoning behind the advice was explained to me
The advice seemed credible
Factor 3 (=.84), labelled credible design, brought together
items describing the extent to which the site had credible
design features and was easy to use:
The language on the site made it easy to understand
The site was easy to use
The advice appeared to be prepared by an expert
The site was owned by a well known organization
The site had a professional design
The layout was consistent with other sites
Hierarchical regressions were then conducted to examine
which factors predicted the extent to which participants
liked and trusted the website and the advice and acted upon
the advice given by the site. The findings (see Table 2)
show that impartiality, credible design and PEx all
positively predict whether people like the website and
impartiality alone was a predictor of intention to act on the
advice. More surprisingly, in terms of trusting the
information online, the two factors impartiality and credible
design positively predicted trust in the website, as expected;
whereas inclusion of patient experience was negatively
associated with trust in the website. This was a surprising
finding and left us with a paradox. Earlier literature was
explicit in indicating that the presence of patient authored
experiences could attract patients to health websites and
that this kind of patient voice was associated with trust. Our
analysis supported the first observation but not the second -
people liked websites that contained PEx, but they didn‟t
trust them.
Content Analysis of Websites Visited
In order to explore this issue further a preliminary content
analysis of the sites participants reported visiting was
conducted. Firstly, the prevalence of different types of
health searches was compared to see whether the health
domains of interest had changed significantly over the
decade. In fact, little has changed and the results of the
current survey show a remarkably similar pattern to those
reported in the 2000 and 2005 studies [25,26,27] (Table 3).
2000
2005
2011
1. Alternative
medicine
1. Womens
health
1. Womens
health
2. Diet /
Slimming
2. Alternative
medicine
2. Alternative
medicine
3. Cancer
3. Fitness
3. Cancer
4. Fitness
4. Diet /
Slimming
4. Arthritis
5. Allergies
5. Arthritis
5. Diet /
Slimming
Table 3: Top five health searches by year of survey
Next we wished to look in more depth at the nature of
online patient experience encountered by our participants,
but to do this, we firstly had to identify a subset of sites
containing PEx, where we believed, with some confidence
Like R2 .57
Trust R2 .59
Intention R2 .24
Impartiality
β.494, t 9.61, p<.001
β.593, t 11.84, p<.001
β.492, t 9.49, p<.001
Credible design
β.295, t 5.82, p<.001
β.271, t 5.48, p=.000
Non-significant
PEx
β.110, t 2.71, p<.01
β.-.137, t -3.5, p≤.001
Non-significant
Table 2: Hierarchical regression outputs
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that patients had actually engaged with that available PEx.
So we isolated those sites that were reported by a subset of
individuals (n=40) who had both (i) scored highly on a
question about their motivation to seek PEx online and (ii)
could remember enough details about the site they visited
for us to access it for analysis. A content summary of the
resulting sites is provided in Table 3. These sites vary
enormously in terms of their approach to PEx, although
they can be roughly classified into three types. Firstly, there
are some sites that are designed specifically for the
provision of PEx. On these sites visitors are able to
negotiate a portfolio of different experiences with an
example being patientslikeme, shown below (figure 1).
Figure 1: A site devoted to patient experience where different
categories of experience are referenced from the home page.
Secondly, community-based sites often use PEx message
boards and stories interwoven with information and advice
from other sources. The sites typically relate to niche health
fields and examples include hystersisters and twoweekwait
(see figure 2 below). Here, the PEx material is readily
accessible from the home page and can take a variety of
forms but is largely supportive in tone and generally
moderated, but unedited. More unusually some of these
communities keep the PEx material housed separately
within a separate site, two examples being Aspergillosis
and autism speaks. The former uses a yahoo group to host
its forum activity whilst the latter makes extensive use of
social network media such as facebook and twitter to
increase the scope and interactivity of their PEx.
Figure 2: A community PEx site showing advertising content
in a banner on the right-hand side
The commitment to PEx is less obvious within the third
type of site: larger health portals such as healthline and
webmd (see figure 3) which contain relatively little PEx
material and seem to use it largely as an „add on‟ feature to
providing a feel good factor for the site. The quality and
depth of PEx on these major health portals can be limited
and is often centered on read-only material which does not
facilitate peer sharing. The patient stories are often heavily
edited and written up as magazine style articles rather than
as first person narratives.
Figure 3: A mainstream health portal, with no obvious links to
patient experience from the home page
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Description of website
Funding
iPEx types
Aspergillosis Patient Support
(http://www.aspergillus.org.uk/newpatients/index.php)
Advertising/
sponsorship
Patient stories, Forums, Videos of
meetings
Autism speaks (http://www.autismspeaks.org/)
Donation
Social network messages e.g.
tweets
Healthline (http://www.healthline.com/)
Advertising
Videos of health experiences
HysterSysters (http://www.hystersisters.com/vb2/)
Advertising
Forums, Blogs, journals, chatroom,
photographs
MayoClinic (www.mayoclinic.org)
Clinic
Patient stories
NHS choices (http://www.nhs.uk/Pages/HomePage.aspx)
Government
Patient stories (videos/text)
PatientsLikeme (www.patientslikeme.com)
Selling data
Patient summaries and data,
Forums
SurfaceHippy (http://www.surfacehippy.info/index.php)
Advertising
Forums, Patient stories
Twoweekwait (www.twoweekwait.com)
Advertising
Forums, Patient stories
WebMD (www.webmd.com)
Advertising/
sponsorship
Forums
Table 4: Websites and their funding source and types of PEx they contain
Looking at Table 4, what is particularly interesting is the
prevalence of advertising as a funding model for PEx-heavy
sites. We know, from a range of previous studies [21, 28]
that the presence of advertising on a site can lead to a
negative first impression and can lead to either immediate
disengagement or to subsequent mistrust of the messages on
that site. In a recent study, for example, [29] the presence of
advertising on a website showing the link between drinking
and breast cancer had no immediate effect on drinkers‟
overall attitude to the site, but did subsequently affect
health behaviors: those who drank heavily reported a
reduction in drinking following exposure to the non-
commercial site, but no reduction in drinking when a more
„commercial‟ site presented them with the same health
message, but accompanied by advertising. Could this be the
factor that accounts for our finding that, while patients are
drawn to PEx online, they find sites containing PEx
difficult to trust? In order to explore this specific issue in
more detail, we conducted a second, qualitative
investigation in which we invited four small groups of
people with particular health concerns (smokers wondering
whether to quit) into the lab to search for relevant health
information online and to share their views about the kinds
of material they found there.
STUDY 2
Method
Fifteen smokers were recruited to take part in a follow-up
study in which they were invited to search for health-related
smoking material online. Participants were recruited via a
number of sources including council newsletters, leaflets
and flyers.
Smokers
The fifteen smokers (7 male, 8 female, mean age of 23
years) were all experienced Internet users. They had been
smoking on average for 7 years and smoked an average of
11 cigarettes per day.
Procedure
Each participant was allocated to one of four focus groups
and asked to attend a 2-hour session held in an Internet café
styled lab in Newcastle-upon-Tyne, UK. During the first
hour of the session, participants were invited to search the
Internet freely, looking for information and advice on
smoking and health. Sites visited were automatically
logged, but participants were also asked to record their
perceptions of each site manually via a logbook and use this
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information during a subsequent group discussion with a
facilitator. Group discussions covered four main themes: 1)
Selection and rejection factors 2) liked and disliked
websites, 3) patient experience/account features 4) trust and
behavior.
Analysis
Focus group comments were transcribed and then read and
reread by two coders who compared emerging themes prior
to undertaking a more thorough independent thematic
analysis following the guidelines of Braun and Clarke [30],
in conjunction with the data derived from participant
logbooks. Coders were primed to highlight comments in
relation to trust or mistrust, like or dislike of sites and were
also interested in the presence or absence of a „commercial
voice‟.
Figure 4: An example of an NHS sponsored smoking cessation
site containing PEx, but no advertising
Results and Discussion
From the logging data, an average of 8.5 websites were
visited per participant and these sites were relatively
consistent across participants. The most commonly viewed
sites (in order of number of participants that visited the site)
were the UK National Health Service‟s (NHS) Smokefree
site, Netdoctor, Wikipedia (Smoking cessation), and the
British Broadcasting Corporation‟s (BBC) smoking
website. The consistency in sites viewed suggested that
participants may have employed similar strategies and/or
been influenced by similar factors when deciding which
sites to examine. From the discussions, logging data, and
logbooks, all participants in study one attempted to locate
relevant websites using Google, although some participants
also employed a more targeted search via the NHS.
“I went for Google, and I have typed things relating to
smoking, health and all those kinds of stuff” (Focus group
1, Participant 5)
“I just went on the NHS one and typed smoking in the
search thing.” (Focus group 1, Participant 6)
As we would expect, from the survey data, we did find that
people really liked having access to other people‟s
experiences online.
“Well the patient UK one did have experiences of people
who‟ve smoked and who‟ve quit and health issues that
they‟ve had whilst smoking and once giving up and things
like that and that was quite good I think - reading about
other people‟s experiences.” (Focus group 1, Participant 3)
“Who is better to tell you to about it than someone who‟s
already done it? in my opinion… So I quite like it (the
PEx).” (Focus group 3, Participant 9)
We also found support for the claims that such experiences
can help make the health issues seem more real and
engaging as people felt that they could relate more to other
people who are in similar situations.
“[It‟s more helpful] If they‟re more realistic if they‟re not
just literally a doctor‟s sat and written it like „Mrs C has
done this‟. If it‟s an actual person saying „look it‟s really
hard. I‟ve shouted a lot. I‟ve done this, I‟ve done that‟ then
you can relate to them.” (Focus group 1, Participant 2)
“It makes sure it relates to the individual doesn‟t it? If your
doctor tells you to stop smoking the chance is they never
smoke, so they don‟t, I don‟t think they understand, they
can‟t understand the position we are in, because they never
smoke, whereas somebody has smoked, they smoked for
eight years, they quitted, and they got a successful story, it
will make me think, wait a minute, they know how it is to
smoke, they also know how it is not to smoke, so it kinds of
applies to you to stop smoke and makes you feel like you
should.” (Focus group 4, Participant 14)
However, the presence of advertising was almost
universally raised as something that was disliked about
some of the sites.
“There‟s lots of adverts as well which annoyed me. It‟s like
they get some form of gain out of telling people to quit.
There‟s adverts and even some adverts weren‟t even related
to smoking.” Focus group 1, participant 2)
Too many adverts. Looks like websites gets money out of
advice (Focus group 1, Participant 2)
As predicted, we found considerable evidence that users
were suspicious about site content and advertising had an
important role to play here. Sites that appeared to be selling
a product or that were otherwise viewed as commercial
created very negative first impressions in the sample, and
participants often felt that information contained on a site
such as this would not be impartial or trustworthy.
“I have a website that I really don‟t like, it‟s more, it seems
like a business setup. It was more like, smoking is really
bad, smoking is really bad, buy something off us and we
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going to make money out of you. That kind of make me feel
like fall into this massive money making scheme.” (Focus
group 4, Participant 13)
“Seemed like a money maker - forcing pricey products.
Business set up.” (Logbook, Participant 15)
More tellingly, participants became particularly suspicious
if it seemed that the PEx had been used cynically to
advertise a particular product or manipulate beliefs.
“There is one particular one that got like a few ... a review
of stories of how people are doing with the product, but I
think those websites try to sell their products rather than
they are really trying to be help.” (Focus group 3,
Participant 10
“They [are] sort of using it [in a] commercial way, like I
can see information on TV there, but if its someone not
trying to sell you anything just sharing their experience I
would find them quite helpful” (Focus group 3, Participant
9) “No it seems to be a commercial way I don‟t usually
believe it!” (Focus group 3, Participant 10)
Figure 5: An explicitly commercial site with a clear home page
link to patient stories
Participants also seemed very aware of the potential for
PEx to be manipulated and were concerned about the extent
to which the experiences might be honest, questioning
whether they may have been scripted rather than represent
an actual experience:
That kind of story from an actual person or something
would have way more impact than some typed words on the
internet that could have been put there by anyone. You
don‟t know who typed the website. (Focus group 1,
Participant 7)
“Yeah, but, it has like a name of somebody but it wasn‟t
really name, it was like, webname, you know somebody
would have a like login name rather than the actual name
of the person, which makes me think that it‟s not real
person at all, maybe it‟s the same person writing 3
times…” (Focus group 3, Participant 11)
These discussion points are revealing as they highlight the
liking of PEx material, but indicate how they can be
mistrusted if used in a seemingly commercial way, to the
point that users may actually question the genuineness of
the PEx. As noted earlier, the issue of advertising or using
PEx for some kind of commercial gain is a particularly
interesting one for online health communities. Harris and
colleagues [29] found that the mere presence of advertising
online can generate mistrust, which can lead to defensive
responding to unpalatable material [26]. This is worrying
when we consider that the funding models for so many
well-intentioned social health enterprises are advertising
based. With this in mind, we end with a discussion of how
our findings might suggest ways in which PEx design can
be improved in order to have maximal effect.
DISCUSSION
The trust issues raised in this paper are important for
understanding the future of PEx. We know PEx is growing
and is likely to be increasingly employed by those hoping to
engineer positive health behavior change. A number of web
based interventions focusing on, for example, smoking
cessation, weight management and physical activity [31, 32,
33] use tailored programs of information and advice to
facilitate behavior change and researchers are considering
the ways in which online social networks could also be
harnessed support smoking cessation [34].
We also know that people genuinely want to learn from
others who have shared similar experiences, but are
cautious because too many of those experiences seem
credible. Given this, it is interesting that so little is being
done to incorporate PEx into the large, mainstream eHealth
sites and portals. From a health policy perspective, this
surely needs to change: if genuine patient stories are an
important health resource then such stories should be
integrated into the larger government and charity portals
without recourse to advertising that may taint the message.
In the UK, a 2010 White Paper „Equity and excellence:
Liberating the NHS‟ highlighted the government‟s intention
to put patients at the heart of the NHS, through an
information revolution and greater choice and control‟ and
to ensure that patients will have access to the information
they want, to make choices about their care‟ [35]. The
presence of good quality forums for health information and
support that is „generated by the patients themselves‟ is
likely to be central to this information strategy and it is
interesting that the NHS have not only incorporated patient
videos into their NHS choices website, but have also
entered into a collaboration with an external site „health
unlocked‟ helping patient groups to set up more interactive
forums.
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Based on the findings we report here, we would make the
following specific recommendations in respect of PEx:
Make PEx easy to find on the larger portals: Ensure that
the experiences are clearly labelled within the application
and are directly accessible from the homepage or first
screen of any application.
Avoid commercial overtones: PEx and commerce do not sit
together comfortably. Product testimonials and advertising
wrapped up as PEx reduce the value of PEx and the
credibility of the application as a whole.
Include a balance of PEx and medical facts and figures:
This balance should foster credibility and allows users to
become familiar with a particular condition or treatment
and then to follow up with questions or to read about
peoples‟ first hand experiences.
Consider the trust issues associated with the site as a
whole: The look and feel of the site or application as a
whole will have an important effect on the extent to which
users trust and engage with the PEx provision. Consider
issues such as the professionalism of the site‟s design,
familiar navigation and layout and branding and reputation
factors.
Think about the potential effects of PEx: If the application
is centered around the provision of support and relationship
development designers will need to consider the level of
interactivity possible and the type of PEx on offer. Is the
application intended to assist with decision making? Will
users exchange images or video material to facilitate
visualization of the health condition? Not all users are
looking for all of the seven potential benefits of PEx
reported by Ziebland and Wyke,[19] so which benefits are
most likely for your community?
Consider whether PEx is right for this health domain. This
field is relatively young and yet it is already clear that
different patient groups have very different needs. Further
research would be useful to establish whether PEx is sought
and deemed helpful across all health topics, or whether
there are particular domain-specific benefits.
Studies now need to test whether these findings can be
replicated in cultures, such as the US, where advertising of
drugs and medical services is more mainstream.
CONCLUSION
PEx can provide patients with access to experiential
information and advice, but it is most commonly found in
health websites that use advertising as a funding model.
This is not the ideal situation for the future of health
communication, as it can create mistrust and gives patients
cause to discount the information they find online. To offset
this problem, greater attention should be paid to other trust
indicators and the larger and more credible health portals
should give more prominence to PEx material.
ACKNOWLEDGEMENTS
This publication presents independent research
commissioned by the National Institute for Health Research
(NIHR) under its Programme Grants for Applied Research
programme (RP-PG-0608-10147). The views expressed in
this publication are those of the author(s) and not
necessarily those of the NHS, the NIHR or the Department
of Health.
The authors would also like to thank Phoenix Mo for her
involvement during the early stages of this research project.
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