Factors that affect public engagement with eHealth services: a literature review

Full text

Factors that affect public
engagement with eHealth services:
a literature review
Nicholas R Hardiker
Maria J Grant
School of Nursing
June 2009

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Contact:
Dr. Nicholas Hardiker
Senior Research Fellow, School of Nursing
Room MS 2.29, Mary Seacole Building
The University of Salford
Greater Manchester
M6 6PU
UK
Tel: +44 (0)161 295 7013
email: n.r.hardiker@salford.ac.uk
© University of Salford

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Project team
Nicholas Hardiker: Nick is a Senior
Research Fellow at the University of
Salford and Professor (adjunct) at the
University of Colorado, Denver, USA.
He established and currently leads a
highly active and successful
Information and Evidence research
group. He has an interest in and is
widely recognised for his expertise in
all aspects of eHealth. He has been
involved in a number of literature
reviews, including (with MJG) an
update of a Cochrane review of the
impact of nursing record systems on
patient outcomes and practitioner
behaviour and a review of grey
literature around public health
interventions on behalf of NHS North
West.
Nick acted as principal investigator for
this review and was jointly responsible
for searching, filtering, appraising and
synthesising.
Maria J Grant: Maria is a Research
Fellow (Information) at the University
of Salford. She facilitates research
capacity building within Salford Centre
for Nursing, Midwifery and
Collaborative Research. This includes
support for systematic reviews into
education, and health and social care
practice and policy sectors. She has
an interest in evidence-based library
and information practice and its role in
facilitating the professional
development of library and non-library
professionals, and was recently
appointed Editor of the Health
Information and Libraries Journal. She
has been involved in a large number of
literature and systematic reviews, most
recently including an investigation of
the role of the academic in clinical
practice, the impact of nursing record
systems (with NH), and the impact of
caring for those with chronic
obstructive pulmonary disease on
carers’ physical and psychological
wellbeing.
Maria acted as co-investigator for this
review and was jointly responsible for
searching, filtering, appraising and
synthesising.
Advisory team
In addition to members of the project
team, the steering group for the
‘Including everyone in electronic health
information services’ project acted as
advisors to this review.

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Contents
Plain language summary ........................................................................................ 5
Executive summary ................................................................................................ 6
Background ............................................................................................................ 8
Method .................................................................................................................... 8
Results .................................................................................................................. 10
Characteristics of users ........................................................................................ 11
Technological aspects .......................................................................................... 17
Characteristics of eHealth services ....................................................................... 19
Social aspects of use ............................................................................................ 22
eHealth services in use ......................................................................................... 24
Summary and recommendations arising from the review ..................................... 28
Appendix A – Search strategies ........................................................................... 31
Appendix B – Data Extraction Tool ....................................................................... 35
Appendix C – Lower level and intermediate content themes ................................ 36
Appendix D – Intermediate and overarching content themes ............................... 41
References ........................................................................................................... 43

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Plain language summary
We looked for information on what helps or stops people from using computers and
the Internet, going online, to help manage their health (‘eHealth services’). We found
four types of eHealth services: general information about health on the Internet,
tailor-made health information, online support groups and going online with doctors
and other health workers. People are less likely to use eHealth services with
increasing age, if they are not white, if they are less affluent and if they have done
less well at school. It is perhaps not surprising that people who are not interested in
eHealth services, or in their own health, are also less likely to use eHealth services.
People are more likely to use eHealth services if they know how to use computers
and the Internet, if they have used eHealth services before, if the eHealth services fit
into their day-to-day lives and if the eHealth services let them meet other people like
themselves.

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Executive summary
Project aims
The aims of this study were:
1. To examine literature relating to
the use of eHealth services
2. To identify and explore factors
(barriers and facilitators) that
may influence engagement with
those services by the public
Methods
Initial text word searches were
undertaken on MEDLINE (via OVID) to
find exemplar articles from which to
harvest MeSH headings (to act as
search terms). These headings fell into
three categories: computer application,
evaluation and health service. The
search strategy was refined to ensure
retrieval of all exemplar articles. It was
translated for use with CINAHL (via
EBSCOhost) and EMBASE (via the
National Library for Health, now NHS
Evidence). All searches were carried
out in January 2009 and were
purposefully not restricted by date.
After the exclusion of duplicates, 2622
abstracts were independently reviewed
by both members of the project team.
Items were selected for further
analysis if they met ALL of the review
inclusion criteria, which were:
1) Named or identifiable examples
of eHealth services
2) Used by the public
3) Barriers or facilitating factors
influencing use
4) Readily and freely available
online
5) Published in English
Seventy articles were obtained for
closer examination. Fifty of these were
identified as meeting the review
inclusion criteria and were subjected to
detailed analysis.
Using a data extraction tool developed,
piloted and refined by the project team,
the content of all included studies was
summarised. Emergent themes were
identified through a face-to-face
meeting of project team members.
Results
Four types of eHealth service/resource
were identified in the literature: health
information on the Internet; bespoke
online health information; online
support, mailing lists and online
communities; and telehealth services.
One hundred barriers and
facilitators/motivators emerged from
the literature. These were further
categorised into 29 higher level
categories and distilled into 5
overarching themes: characteristics of
users; technological issues;
characteristics of eHealth services;
social aspects of use; and eHealth
services in use.
Summary of findings
This review draws together literature
on public engagement with eHealth
services. It identifies new evidence
while supporting what may already be
known anecdotally.
The findings suggest that both
increasing age and low socio-
economic status might be negatively
associated with perceptions and use of
eHealth services. Non-white ethnicity,
a lack of motivation, interest or
engagement with health and eHealth
services, a lack of perceived
usefulness or relevance and a lack of
knowledge or skills around computers

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or Internet use all appear to be barriers
to uptake of these services. However,
exposure to eHealth services appears
to improve both the perceptions of
non-users and frequency of use.
Engagement with eHealth services is
affected by how they are implemented,
by their ease of use and by their fit (or
lack of fit) with everyday life.
Higher levels of educational attainment
and literacy appear to be associated
with increased awareness and use of
eHealth services, and higher levels of
use exist among those describing
themselves as white or from a higher
socio-economic background. Those
with computer and Internet access
(particularly at home) are more likely to
engage with eHealth services. Service
content is an important factor in terms
of quantity, relevance,
comprehensibility, reliability and
impartiality, navigability, flexibility and
tailoring of content.
While certain potential users of
eHealth services believe that
information will make little impact on
the status quo and may actually be a
burden, other users find eHealth
services empowering, reassuring and
supporting.
Health status and information needs
can act either as motivators or
inhibitors of engagement with eHealth
services. Trust also appears to
influence users’ perceptions of eHealth
services, although this doesn’t
necessarily affect patterns of use. For
example, there are mixed opinions
towards ‘scientific’ sources and
researchers. Interestingly, with few
exceptions, security and privacy
concerns do not feature highly in this
review.
The findings of this review are
supported to a large extent by other
earlier literature reviews.
Recommendations arising from the
review
• Efforts should be targeted
towards those who are
underserved by eHealth
services due to age, ethnicity,
educational attainment and
socioeconomic status. This
should include encouraging use
through improved access to
computers and the Internet in
order to increase familiarity and
improve perceptions of
usefulness and relevance.
• There should be continued
focus on appropriate design and
content of eHealth services.
Services should aim to provide
understandable, relevant and
trustworthy content to a wide
variety of potential users and in
a way that is straightforward to
use and fits with day-to-day life.
• The current interest in social
networking should be
capitalised upon to enable
users of eHealth services to
reap the benefits of online
community engagement.
• Finally, the role of health
workers in the delivery of
eHealth services, including
endorsement and facilitation,
should be clarified.

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Background
This literature review forms part of a
larger project ‘Including everyone in
electronic health information services’.
The larger project, a response to an
invitation to tender issued by NHS
Connecting for Health, seeks to find
out what help people need to get
health information using computers
(eHealth services).
The aim of this aspect of the project
was to examine literature relating to
the use of eHealth services, and to
identify and explore factors (barriers
and facilitators) that may influence
engagement by the public with those
services, focusing if possible on use by
older people, people from lower socio-
economic groups and people with
learning difficulties.
Ethics and Governance
The larger study, including the
literature review, received ethical
approval from the University of Salford
and from Wrightington, Wigan and
Leigh NHS Local Research Ethics
Committee.
Method
Sources and searches
The breadth of the search (and to a
lesser extent the depth of analysis)
was shaped by resources and
timescale. The literature sources
considered in this project included
national and international academic
and professional (non-academic)
journal articles available via three
bibliographic databases, MEDLINE,
CINAHL and EMBASE.
Other potential bibliographic sources,
including sources of grey literature e.g.
Health Management Information
Consortium (HMIC), Web of
Knowledge, INSPEC were not
consulted due to resource and time
constraints. Citation tracking was not
carried out on included articles for
similar reasons.
The search strategy was developed in
stages:
1) An initial text search of
MEDLINE (via OVID) to find
exemplar articles from which to
harvest indexing terms –
‘healthspace’ (2 articles
returned), ‘nhs choices’ (1
article), ‘choose and book’ (19
articles) ‘ehealth services’ (12
articles), ‘e-health services’ (24
articles)
2) Allocation of relevant keywords
(Medical Subject Headings i.e.
MeSH) into three categories
(combined with AND):
a. Computer application
e.g. Internet,
Telemedicine,
Information Systems
b. Evaluation e.g. Patient
Satisfaction, Attitude to
Computers, Focus
Groups
c. Health service e.g. Self
Care, Referral and
Consultation, Information
Service
3) Refinement of categorised
keywords to ensure retrieval at
least of all exemplar articles
4) Reworking of strategy for use
with CINAHL (via EBSCOhost)
and EMBASE (via the National
Library for Health, now NHS
Evidence).
The intention was to retrieve items that
included an application, a service and

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an evaluation. Searches were
purposefully not restricted by date. All
searches were carried out in January
2009 (see Appendix A for search
strategies).
Criteria for inclusion and exclusion
Each item from the initial search was
reviewed independently by the two
members of the project team. Items
were selected for further analysis
according to the following criteria:
• Named or identifiable examples
of eHealth services
• Used by the public
• Barriers or facilitating factors
influencing the use eHealth
services
• Readily and freely available
online i.e. open access or
available via the University of
Salford e-library of online
journals
• Published in English
Items were excluded if they were:
• Commentary, book review,
conference report, conference
paper, conference abstract,
editorial, opinion-based
Relevant review articles were reserved
for cross-validation of the final results
of this review.
Disagreements over which items to
include were resolved through face-to-
face negotiation.
Agreed included items were obtained,
allocated arbitrarily to the two team
members and subjected to further
review.
Thematic analysis
A data extraction tool was developed,
piloted (on 3 included articles) and
refined by the members of the project
team (see Appendix B for extraction
tool).
The tool allowed the team to analyse
articles into the following categories:
• Bibliographic details
• eHealth service (including
purpose)
• Study design
o Participants (types of
users, numbers of
participants, comparison
groups)
o Methods of data
collection and analysis
o Timescale
• Findings
• Barriers
• Facilitators/Motivators
• Reviewer and review date
Emergent themes that were common
across different studies were identified
through a face-to-face meeting.

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Results
Bibliographic searches
Four hundred and forty abstracts were
returned via CINAHL, 1226 via
EMBASE and 1153 via MEDLINE.
After the removal of duplicates, 2622
abstracts were reviewed in terms of
inclusion criteria by both members of
the project team.
Seventy articles were obtained for
closer examination. Fifty of these were
identified as meeting the review
inclusion criteria and were subjected to
detailed analysis.
Six additional literature reviews were
obtained for post-analysis comparison.
Emergent themes
The first set of themes to emerge from
the analysis concerned the type of
eHealth service/resource featured in
the articles. Four themes emerged:
1. Health information on the
Internet (27 articles featured
this theme)
2. Bespoke online health
information e.g. CDs, kiosks,
portals (7 articles)
3. Online support e.g. coaching,
mailing lists and online
communities (12 articles)
4. Telehealth including remote
consultation, monitoring and
reporting (4 articles)
The second set of themes to emerge
concerned barriers and
facilitators/motivators. One hundred
unique themes emerged.
These were further synthesised into 29
higher-level categories (see Appendix
C for categorisation), which in turn
were distilled into 5 overarching
themes (see Appendix D for
categorisation):
1. Characteristics of users e.g.
literacy levels
2. Technological issues e.g.
security and privacy
3. Characteristics of eHealth
services e.g. content issues
4. Social aspects of use e.g.
shared experience
5. eHealth services in use e.g. fit
with everyday life
These overarching themes are used in
this report to structure the remainder of
the analysis.

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Characteristics of users
Age
Age appears to affect the uptake of,
and satisfaction with, eHealth services.
In a questionnaire survey of 235
gynaecology patients in New Zealand,
Brenner [1] found that older people
between 50 and 60 years of age found
a web-based gynaecology results
reporting service less user-friendly
than those in their twenties. The author
suggests that this may not be due to
ease of use, but to the ability of the
older users to use the Internet. In a
later study of 560 French breast
cancer patients in 11 centres, Mancini
et al., [2] noted that, once multivariate
adjustments had been made,
increasing age was a contributing
factor in decreased levels of Internet
use for health related information.
Ethnicity
Ethnicity appears to affect access to,
and uptake of, eHealth services.
During a 7-week period in June/July
2003, Dickerson et al. interviewed 315
patients attending three urban primary
care clinics affiliated with the School of
Medicine, University of Buffalo about
their access to the Internet [3]. They
found that respondents classified as
white reported higher online access.
In relation to direct Internet use,
qualitative interviews were undertaken
with 800 recently diagnosed cancer
patients and 200 carers in 3
Birmingham teaching hospitals in the
United Kingdom [4]. James et al. noted
direct Internet use by Asian patients
and their carers was low; 2% and 9%
respectively. Comparative data for
non-Asian patients and carers was not
given.
Between October and December
2000, 188 women with early stage
breast cancer at Columbian
Presbyterian Medical Center, New
York, USA, responded to a mailed self-
report questionnaire survey [5].
Although not statistically significant,
Fogel et al. noted that non-whites were
less likely to use the Internet. This
theme recurs throughout the literature.
Socio-economic status
Economic status also appears to affect
uptake of eHealth services. In a sub-
set of a wider UK study, Blackburn and
Read analysed data for 788
respondents, identified as carers of
disabled children [6]. The carers, all of
whom were listed on either one of
three local authority databases or
carers’ organisations in Devon, West
Sussex and Surrey, responded to a
cross-sectional postal questionnaire
survey regarding Internet use. Non-
Internet users were less likely to be in
paid employment, more likely to be
living in rented accommodation and
less likely to have access to a PC at
home.
Similar findings were identified in
questionnaire survey of 718 people
from three disparate communities in
Australia. The aim of the survey was to
explore attitudes to, and use of, the
Internet as a source of information
across high and low socio-economic
groups [7]. Dart reported that those
from lower socio-economic groups had
lower levels of home Internet access,
lower levels of accessing health
information over the Internet (even
amongst those who had home Internet
access), and they ranked the Internet
lower as a source of health information
(independent of access).
In their study of direct Internet use
James et al. [4] noted that patients
whose cancers are typically associated
with lower socio-economic classes

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(bladder head and neck cancer)
reported lower use of web-based
information; those from semi- or un-
skilled backgrounds reported lower
Internet use generally. Those from
professional or managerial
backgrounds were more likely to have
used the Internet. Although
contributing factors were not explored
in the study on Internet use by Fogel et
al. [5], respondents with higher levels
of income were more likely in this
study to be Internet users.
This finding is supported by a
questionnaire survey of 139 patients
attending a multidisciplinary thoracic
oncology clinic in a Midwestern
University Hospital in the USA [8, 9]
which found that larger annual
incomes, along with higher levels of
education, were associated with
increased levels of Internet use. Both
factors were positively associated with
having a computer and Internet access
at home.
Educational attainment
Educational attainment appears to
influence access to, and uptake of,
eHealth services. In Dickerson et al.’s
study on Internet access, whether
patients had attended or not attended
college was, along with ethnicity, a
significant predictor of online health
information seeking behaviour [3].
Fogel et al. [5] reported that of the
42% who reported using the Internet
for breast health-related medical
information, those with a college
education were three times more likely
to use the Internet. Similar findings
were reported by Peterson and Fretz
[9] who also found that achieving a
higher level of education and having a
larger annual income were associated
with higher computer use at home
(100% vs. 34%) and higher Internet
access at home (100% vs. 28%).
Flynn et al. [10] undertook a
longitudinal study of high school
graduates in Wisconsin, USA, to
determine the characteristics of
patients seeking health information
online and the timing of those
searches in relation to visiting a doctor.
This phone and mail self report study
of Internet-based health information
seeking by 6279 high school
graduates aged 63-66 in Wisconsin,
USA, found that, for those with Internet
access, years of education was
positively associated with searching for
health information online, irrespective
of timing of a visit to the doctor.
Mancini et al. [2] noted a significant
increase in health-related Internet use
if participants had achieved a higher
educational level (adjusted odds ratio
2.1) or if they were currently, or had
previously been, employed in a health-
related occupation (adjusted odds ratio
2.6).
Finally, confirming the findings of
previous studies, James et al. [4]
reported that higher education levels
correlated with greater use of
information via the Internet.
Literacy levels
In common with educational
attainment, literacy levels are also a
factor that affects use of eHealth
services. Birru et al. [11] undertook a
mixed method study of 8 low literacy
adults (3rd to 8th US grade) who were
participating in a reading assistance
programme in Pittsburgh, USA. This
exploration of the use of the Internet
for health purposes involved self-
directed searches for designated
health topics. Subjects participated in
a computer skills workshop 3 weeks
prior to the study. In the study itself,

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data was captured through think-aloud
protocol (in which participants are
encouraged to think aloud as they
carry out specified tasks), keystroke
capture (which records the keys struck
on a keyboard) and questionnaire.
Birru et al. reported that low literacy
level in adults appears to inhibit health
information seeking efforts, with most
web sites requiring at least a high
school level of reading proficiency.
In evaluating 10 years of published
research relating to CHESS, the
Comprehensive Health Enhancement
Support System, University of
Wisconsin, USA, Gustafson et al. [12]
noted that bespoke health information
sources, such as CHESS, also require
a greater level of literacy for optimal
access.
As might be anticipated, higher levels
of literacy are generally positively
related to the uptake of eHealth
services. In 2005, Gray et al.
conducted 26 focus groups with a total
of 157 adolescent students (aged 11-
19) in diverse geographical and socio-
economic settings in the UK and USA
to explore health literacy challenges
when using the Internet for online
health information [13]. They noted
that participants’ health literacy was
deficient in relation to: a) functional
skills e.g. question construction and
correctly spelling medical terms; b)
critical skills e.g. knowing which web
sites to trust and discerning relevant
information; and c) interactive skills
e.g. application of acquired information
to their personal circumstances.
In a later qualitative study of patient
attitudes to a centrally-stored medical
record (NHS Summary Care Record)
and internet-based personal health
organiser (HealthSpace), by
Greenhalgh et al. noted that
respondents with higher literacy levels
were likely to have a greater
awareness of eHealth services (½ with
high literacy levels compared with ¼
with medium or low literacy levels)[14].
This study involved 103 semi
structured interviews with participants
recruited from GP surgeries, walk in
centres, out of hour services and A&E
departments, and seven focus groups
involving representatives from
voluntary sector organisations.
Motivation
Levels of motivation and degree of
engagement were significant indicators
of uptake of eHealth resources. This
includes interest in one’s own health,
openness to experience or a belief that
information can make a difference to
health. In-depth interviews were
undertaken with 13 female patients,
aged 55-74, attending a GP surgery in
Musselburgh, Scotland over two
consecutive days, regarding the
provision of touch screen health
information kiosks within the surgery
[15]. This study used Sense-Making’s
‘time-line interview’ technique, where
users are asked to describe what they
have experienced in a small segment
of time, to gather data. In this study
Williams et al. noted that participants
lacked curiosity to use the kiosk, could
not see what the kiosk might have to
offer, and had assumed it was for
professional use only.
A lack of interest was also noted in
Peterson and Fretz’s study of Internet
use [9]. They reported that patients
who were unlikely to use the Internet in
everyday life were much less likely to
use the Internet access point within the
clinic (16% unlikely [not used] vs. 65%
very likely [had used]).
Structured interviews to examine
Internet use by 200 cancer patients in
the USA revealed that perceptions of

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information accuracy acted as barriers
to use. Helft et al. [16] found that
although 44% of non-users would
access cancer information via the
Internet if they had access, 49% were
not interested in using the Internet as
an information source, possibly as a
consequence of not knowing that
cancer information was available via
this route.
A belief that information would enable
people to deal better with their health
was a motivating factor reported by
participants of Rogers and Mead’s
study of 17 people who had accessed
a free Internet clinic [17]. In semi-
structured interviews with a subset of 5
participants, it was noted that this
group used the Internet to augment
services and to fill the knowledge gap.
Openness to using eHealth resources
was also highlighted as a facilitating
factor in Flynn et al.’s study of Internet
health information seeking [10].
Finally, Greenhalgh et al. [14] noted
that level of engagement and level of
health literacy were associated with a
positive response to eHealth services
such as NHS Summary Care Records
and HealthSpace, while a lack of
interest in one’s own health was likely
to reduce use.
Skills and Knowledge
While prior use and a familiarity with
the Internet appear to be significant
factors affecting uptake of eHealth
services, poor computer skills, not
being able to find specific resources or
not knowing that relevant resources
are available also inhibit use. During
2000, 27 focus groups were
undertaken with 210 young people in
Ontario, Canada regarding the quality
of their experiences in searching for
health information via the Internet [18].
The goal was to provide an in-depth
evaluation of young people’s
perspectives on using a) the Internet to
access health information and b) other
eHealth resources. Skinner et al.
reported on the difficulties encountered
by participants in finding information
on health-related topics, compared
with music, pornography or sports, and
the frustration felt about knowing that
information exists but not knowing how
to access it.
A lack of computer and searching skills
was a recurrent theme in the literature.
Bowen et al. [19] reported that in their
telephone survey of 431 women aged
18-74, in King County, Washington
State, USA, respondents were
unfamiliar in using the Internet; this
obviously inhibited use.
The lack of Internet searching skills
was also noted as an inhibiting factor
in Blackburn and Read’s [6] postal
questionnaire survey, and in the study
by Helft et al. [16]. Ibrahim and Boulos
[20] undertook a questionnaire survey
of 150 Saudi cancer patients to
examine Internet utilization, barriers to
access and information need and
found levels of awareness of the
availability of online health-related
resources to be minimal.
Accessing the Internet in general or an
eHealth service in particular appears
to foster a willingness to increase
subsequent use. In an observational
study, supplemented by a
questionnaire survey, 25 non-urgent
patient attending GP surgeries were
given the opportunity to access a
secure one-to-one triage advice
service online. Eminovic et al. [21]
noted that once patients had used the
service they were more positive about
future use.
In the more recent study of attitudes
and use of the Internet as a source of

15
information by Dart et al. [7], it was
noted that frequent Internet users were
more likely to access health
information over the Internet and to
consider it more important.
Health status
In a telephone survey of 500
Americans seeking to compare health
information use between those who
were sicker and those who were
healthier, Houston and Allison [22]
found an association between lower
health status and a shorter history of
Internet usage. However, those with
fair or poor health status were more
likely to participate in online chat
rooms. And lower levels of mental
health, along with higher perceptions
of general health, were positively
correlated with levels of Internet use in
Bowen et al. [19].
Contrary to expectations, Greenhalgh
et al. [14] found that those defined as
having a potentially stigmatising
condition e.g. epilepsy, believed that
the potential benefit of having an
accessible health record in the event
of a seizure outweighed the risk of a
third party obtaining unauthorised
access to their health record. A ‘virtual
sealed envelope’ securing sensitive
information, for example for mental
health service users, drug
rehabilitation service users or those
who had terminated a pregnancy, was
viewed positively by some participants.
Information needs
Differing information needs and
expectations were apparent in an
investigation in Denmark of an asthma
telehealth service. The online survey,
undertaken by Anhoj and Nielsen in
2004, sought to describe and evaluate
use by patients and health care
providers of LinkMedica [23].
LinkMedica is an online service
providing an asthma diary with an
algorithm for self-management, an
approved knowledge resource with
summaries of evidence and detailed
articles, an un-moderated forum and
the opportunity to direct questions to
experts. 85 individuals (including 8
health care providers) completed the
online survey, and 15 were selected
for in-depth semi-structured interviews.
What became apparent was that two
distinct user groups existed, each with
specific requirements and expectations
of the service. The first group identified
by the researchers had what is
described as an ‘outside-in
perspective’ in that a problem arose in
the outside world which they would
expect to find answers to from
LinkMedica. They expected concise
information and advice relevant to their
particular and current circumstance.
They did not wish to use the diary to
monitor their disease and avoided
scientific articles and expert opinion.
The perspective of the second group is
described as ‘inside-out’. This group
were more often males who found the
news, discussion forums and expert
sections a distraction, preferring to
have fast access to the diary function
without technical obstacles.
Trust
Trust was a factor associated with the
use of many of the eHealth services
identified for this review. In a 4-week
online virtual focus group of 13
members of an online community
(‘Zappers’) for recipients of an
implantable cardioverter defibrillator
(ICD), and follow-up email interviews
with 8 participants in the USA,
Dickerson [24] discovered that the
Internet was considered by many as ‘a
goldmine of ICD knowledge’ and is
greatly valued as an open and
trustworthy source of ICD information,
and the latest news and research.

16
However not all studies were so
positive in their findings. In Mancini et
al.’s study on health information via the
Internet [2] the views expressed about
web sites were divided: 11.1% both
positive and negative views
expressed, 23.8% positive views
expressed; 31.7% negative views
expressed; 33.3% no opinion. Those
respondents who expressed negative
opinions about health information web
sites indicated a preference to be
directed to specific web sites, reporting
that the difficulties they experienced in
understanding detailed medical web
sites was stressful.
In contrast, 121 English-speaking
Canadians completed an 18 item
online questionnaire in Khechine et
al.’s [25] study of patients with long
term conditions into the use of English
language web sites. More than 79% of
respondents visited scientific-based
web sites, including government
websites, and the sites of chronic
illness associations and foundations,
for trustworthy information on
treatment options, application or
follow-up.
However, this trust in research and
researchers is not universal. In
Norway, Glenton et al. [26] undertook
4 focus groups of back pain sufferers
or their carers and family members to
evaluate attitudes to the use of
research-based information. All users
had easy access to the Internet and
were sent a hyperlink to the BackInfo
web site, a resource developed using
the results of Cochrane systematic
reviews on low back pain.
Respondents expressed a suspicion
towards research evidence on the
basis that it was part of the health
establishment and therefore are more
likely to be biased towards orthodoxy.
There was also dissatisfaction that
research situations were not
transferable to real life with an
enthusiastic preference for personal
stories of back pain sufferers.
Concerns over the reliability of web
sites were also expressed in Khoo et
al.’s [27] interview survey of parents
search patterns for children’s health
information. Respondents were
parents attending a tertiary paediatric
emergency department in Melbourne,
Australia. 55% of the 360 respondents
expressed concern about health
information the Internet and 65%
expressed concern about the reliability
of sources, although these issues were
not explored in detail.
Negative past and present
experiences of healthcare and
government surveillance were
perceived as barriers to the uptake of
the NHS Summary Care Record in
Greenhalgh et al. [14].
And finally, Chung and Kim [28]
reported that blogs are perceived as
credible sources of information on
prevention and care in their self-
administered questionnaire survey of
113 members of a cancer-related blog
frequented by patients and carers.

17
Technological aspects
Technological issues were a key factor
in the uptake of eHealth services.
Unsurprisingly, Internet use was
strongly linked to access.
Access to resources
In 1999, Pennbridge et al. [29]
undertook a random digit dialling
computer-assisted telephone
questionnaire survey of 1007 adults in
California to investigate how
Californians use and rate health
information sources, and noted that
respondents with Internet access were
significantly more likely to have sought
health information (56%). Also in 2005
Helft et al. [16] noted that only 10% of
their sample used the Internet and a
further 21% obtained information via a
proxy. However 44% of respondents
reported a willingness to use the
Internet for health information if they
had Internet access.
In the same year, Blackburn and Read
noted that a key reason cited for not
using the Internet was not having a PC
at home [6]. This finding is supported
by Ibrahim and Boulos [20] who
showed through multivariate analysis
that the only distinguishing feature
between Internet users and non-users
was PC ownership.
Similarly, Dart [7] indicated that using
the Internet at home was a factor in
the frequency of Internet in general
and health information in particular.
Although in Andreassen et al.’s [30]
telephone interview study of citizens in
7 European countries it was noted that
71% of respondents were Internet
users and had used the Internet for
health purposes.
Technological issues
Boukhors et al. [31] conducted a
randomised cross over trial involving
the use of computer-assisted insulin
dose management by 10 type 1
diabetes patients. The aims of the trial
included an assessment via pre and
post treatment questionnaires of the
impact of the computer programme on
knowledge, behaviour and quality of
life. Although there appeared to be no
improvement in terms of quality of life
or behaviour, participants’ knowledge
of their disease improved and they
appreciated the software and wanted
to continue using it.
Anhoj and Nielsen [23] noted that
connection speed and logging on
times were an obstacle to uptake of an
asthma telehealth service. As these
issues are not commonplace, it would
be reasonable to assume in line with
the authors that these technological
barriers were transient i.e. associated
with the use of analogue modems.
Operational issues
Eminovic et al. [21] noted that the
average duration of contact for a one-
to-one online triage advice service was
30 minutes - two times the duration of
typical calls to NHS Direct telephone
helpline for a similar cohort of patients.
Patients responded positively to using
the online service.
In 2005 Bruwer and Stein emailed a
questionnaire survey to subscribers of
two Internet support groups for people
suffering from hair-pulling
(trichotillomania) (n=1010) to
investigate the support groups’
perceived effectiveness [32]. The
study was conducted in South Africa
and the findings were based on an
analysis of 81 questionnaires.
Although respondents felt supported,
they indicated three issues that

18
impacted on their use and satisfaction
with the group: the abrupt ending of
discussion threads; the large number
of messages to be read and/or
responded to; and, deviation away
from the topic in question. It should be
pointed out that neither of the support
groups in question was moderated,
which may have contributed to the
frustration of members.
In a study of another un-moderated
Internet breast cancer list, Esquivel et
al. assessed the accuracy information
posted to the list between 1st January
and 23rd July 2005 [33] and identified
10 postings (out of a total 4600
postings, (0.22%) that were either
misleading or false. However, 7 of
these were identified and corrected by
other participants, typically within an
average of 4 hours 33 minutes.
Security and privacy
Respondents (specifically those with
Internet access) in the study of
attitudes to information sources by
Pennbridge et al. raised concerns
about security and privacy issues [29].
Participants expressed unease about
the further integration of the Internet
with their care and apprehension about
medical records being made available
via the Internet.

19
Characteristics of eHealth
services
The characteristics of eHealth services
themselves, particularly concerning
content and physical separateness (or
virtual contact), play a major role in
engagement with those services.
Content issues
In a UK-based exploration via
questionnaire (n=195) of Internet use
for information concerning Barrett’s
oesophagus [34], 53.8% of
respondents (average age 58.7 years)
said that, given access, they would
use the Internet. 40.5% of respondents
(average age 69.4 years) reported that
they would not use the Internet.
Several people who had used the
Internet reported that all the sites were
American and were ‘produced in a way
that made them difficult for the
average man on the street to
understand’. The authors remarked
that the information on these sites was
often ‘unvalidated’.
Sim et al. [35] also found issues with
content in their study of health
information seeking via the Internet.
94% of respondents reported that they
found the Internet useful. However of
these, 18% found the information ‘too
technical’, 18% reported that the
information was ‘too distressing’ and
while 15% felt there was too little
information, 13% felt there was too
much. 6% of respondents did not find
the Internet useful. Of these 50%
found little or no information, 38% felt
there was too much information and
13% thought that the information was
too technical.
Ibrahim and Boulos [20] found that the
most frequently reported barriers to
accessing health-related Internet
resources were an inability to use
computers (57%) and an inability to
read and or write in English (55%).
Even though their study was
conducted among Saudi cancer
patients, an inability to read and/or
write in Arabic was reported as a
barrier by 31% of respondents.
31% of respondents in the study by
Mancini et al. [2] had negative views of
web sites (in the context of cancer
information). Among Internet users,
negative comments indicated that
detailed medical information is difficult
to understand, and that a
recommended web site would be
preferable to having to search
(particularly as many medical web
sites are written in English).
In the study by Birru et al. of Internet
use for health purposes [11], although
subjects were judged to have
answered only 8 out of 24 questions
‘correctly’ via the Internet, self-reported
data was generally more positive,
indicating that the subjects were
overestimating their own ability.
Several subjects had difficulty
searching and navigating web sites
and had problems understanding
health-related web sites due to a
mismatch in literacy levels.
In contrast to this, in a randomised
controlled trial in the USA involving an
Internet-based health coaching
resource [36] only one participant (out
of 121 patients with chronic pain,
depression or impaired mobility)
reported difficulty understanding or
using the educational materials.
A study in the USA by Bernhardt and
Felter [37] of 20 young mothers in 4
focus groups explored the use of the
Internet for paediatric health
information. Most participants had
used the Internet to access health
information both during pregnancy and

20
after childbirth. The study reported
that, although participants did use
commercial websites, they expressed
disdain for product websites.
Organisational websites were seen as
useful but sometimes ‘too scientific’
(note that the average reading age of
participants was higher than average).
Many participants were concerned
about the reliability of websites and
had their own strategies for
determining credibility e.g. trusting
websites from education (.edu or .ac)
over those from the commercial sector
(.com). In terms of online support,
participants preferred online health
information to come from health
professionals but parenting information
to come from parents.
Again in the USA, Diefenbach and
Butz [38] evaluated an interactive
educational system for survivors of
prostate cancer. The study involved a
preliminary survey of 675 patients
(response rate unknown), 3 patient
focus groups (n=18) and 2 spouse
focus groups (n=15). Overall,
participants were very interested in the
software and appeared to prefer it to
print material. They appreciated the
use of metaphors (the software
employed the notion of a virtual health
centre with a consulting room, a library
and a support group room), the
tailoring of information according to
individual needs, and the flexibility to
access information in any order.
Access to information
Clearly, content does not always act
as a barrier to engagement with
eHealth services. For example,
Khechine et al.[25], found that the
most commonly-reported reason for
seeking information was at the
treatment identification phase of an
illness (94.2%), closely followed by the
treatment application or follow-up
phase (86%). Interestingly, the most
visited web sites were those that
provided scientific information (e.g.
governmental web sites, or web sites
of associations or foundations).
Physical distance
In 2003, Skinner et al. [18] reported
that in terms of the popularity of the
Internet as a source of information,
anonymity was a common theme (e.g.
the ability to frame a question and
receive support without being identified
or judged) i.e. anonymity acts as a
facilitator for managing sensitive
content.
Participants with dental phobias
(n=143) in an online survey of an
international online support group to
provide support to those with dental
anxiety [39] appeared to benefit from a
feeling of not being alone and
appreciated a safe and non-
judgemental, empathic, understanding
environment. There were three
emergent themes: ‘Searching for help’,
‘Sharing fears’ and ‘I feel empowered’.
Participants reported that online
communication conferred a degree of
autonomy and control that would not
be possible in face-to-face
interactions. As well as having access
to practical information from others,
group members also reported a
degree of empowerment in relation to
their condition.
Similarly, Bruwer and Stein found that
the users of mailing list support groups
felt supported, decreased their sense
of isolation and valued the ability to
obtain information and tips about the
condition and treatments via the lists
[32].
Dickerson [24] also found contact with
other people in a similar position and
sharing experiences first-hand to be
important.

21
Five related themes emerged (from an
analysis of the discussion forum
postings and emails):
• Getting past fear with
knowledge and support
• Gaining context through a
window into the future (though
the first hand a personal
experience of others)
• Internet as a mountain of
information: A goldmine of ICD
knowledge (required filtering
and evaluating)
• Internet as social interaction
(cyber friendship and humour)
• Becoming informed consumers
A further study by Hoybye et al.
exploring attitudes towards a mailing
list (SCAN-BC-LIST) involved
participant observation and semi-
structured face-to-face and on-line
interviews with 15 women with breast
cancer who had undergone breast
surgery and had received or were
receiving chemotherapy in
Scandinavia [40]. In common with the
findings of Buchanan and Coulson [39]
this resource also appeared to break
down the sense of isolation, facilitate
the sharing of experiences as a means
of finding ways of living with cancer
(including for those with a recent
diagnosis), empower users and foster
a sense of control. Participants
reported that it was absence of face-
to-face contact on the Internet rather
than anonymity that made it easier to
start discussions on difficult and
painful subjects; the intimacy and trust
formed online created the basis for
discussion when women met face-to-
face.
Anonymity may actually act as a
barrier to engagement with some
eHealth services. In a comparison
between a telephone helpline and a
personalised online cancer information
service, Hardyman et al. [41] found
that, while participants valued the use
of a range of media, the impersonal
nature of online services may affect
people’s willingness to seek
information on sensitive topics. The
UK-based study involved analysis of
anonymised summaries for 994
telephone enquiries and 3096 web
enquiries. Users of the web tended to
focus on facts to fulfil basic information
needs e.g. types of cancer and were
less likely to request information on
sensitive issues, while telephone users
wanted to discuss less tangible issues
e.g. living with cancer.
Williams et al. [15], found value also in
direct person-to-person
communication in their study of touch
screen health information kiosks. For
the people involved, the first and major
source of information was the doctor;
other sources were consulted when
recommended or provided. There was
a lack of curiosity – patients wanted
little more than the minimum
information of instructions needed to
deal with their condition – and an
assumption that the kiosk was not
intended for patients or would not meet
their needs.

22
Social aspects of use
In the majority of cases online
discussion and support groups are
viewed positively in that they appear to
provide a forum for social contact,
fostering a sense of belonging and
shared experience.
Belonging
In Dickerson’s study of an online
community [24], respondents valued
being part of a group of individuals
who were in a similar position to
themselves and could comprehend
and identify with their experience.
Respondents in the Bruwer et al. study
also indicated a sense of feeling
supported by discussion list members
[32].
Members of the HeartNET online
support group investigated in
Bonniface and Green’s [42] mixed
method study indicated that they
gained a sense of reassurance and
empathy from the online community.
Bonniface and Green used a
combination of formal semi-structured
in-depth interviews and an analysis of
discussion board data and other
information exchanges.
Respondents to Buchanan and
Coulson’s [39] questionnaire survey
indicated that access to and sharing of
personal stories in a safe and non-
judgemental environment were key
motivators for continued membership
of the support group.
Shared experience
The sharing of experiences was
instrumental in members initiating
postings in the qualitative analysis by
Frost and Massagli of a sample of 123
(2%) of messages posted to
PatientsLikeMe online community for
amyotrophic lateral sclerosis [43].
It was noted by Glenton et al. [26] in
their study on the use of research-
based information that participants
were sceptical and mistrustful of
researchers and research evidence,
believing them to be biased for or
against particular types of medicine
and different from ‘real life’. However,
participants indicated that when
research findings were integrated with
case histories the findings could be
personalised and were subsequently
viewed as more meaningful.
Social contact
In Dickerson [24] respondents reported
the value of social interaction as
facilitated by the ‘Zappers’ online
community. The accessibility of the
group compared with face-to-face
meetings, and the opportunity to relate
to, confide in and encourage others
were particularly appreciated.
Hoybye et al. [40] reported a similarly
positive reaction to online support
groups in their study. Participants
valued the mailing list for its role in
breaking down social isolation. Newly
diagnosed women used the list to seek
the experience and advice of women
who had already lived through surgery
and various treatments, while women
who had lived with breast cancer for
some time ‘gratefully took the
opportunity of telling their stories’.
Members reported that the lack of a
physical presence (not to be equated
with anonymity) made it easier to start
discussions on difficult and painful
subjects.
Reassurance
Respondents in Bonniface and
Green’s [42] study of the HeartNET
online support group found the
provision of information and mutual
support to be emotionally supportive
and providing a sense of reassurance.

23
In a purposive sample of participants
in a randomised controlled trial (RCT)
of joint teleconsultation (JTC), Harrison
et al. [44] undertook semi-structured
interviews with 28 RCT participants
into their perceptions of JTC.
Participants reported that they found
the presence of the GP reassuring
during JTCs with specialists, felt they
had the undivided attention of the
specialist, and could ask the questions
they wanted to ask. They particularly
liked the debriefing after the
consultation though they indicated that
they would prefer a face-to-face
consultation if a physical examination
was required.
In March-April 2005, van der Meer et
al. [45] undertook a comprehensive
study involving a 1 month
observational study of Internet based
lung function and symptom monitoring
of 97 adolescents from 19 GPs in the
Netherlands. This was followed up with
35 of the adolescents taking part in
one of eight focus groups. van der
Meer et al. noted that those with poor
asthma control found reassurance
from messages when function or
symptoms deteriorated and from
advice on how and when to change
medication. This population found the
site useful in formulating care plans
and were able and ready to use the
self-management plan for a long
period (defined as at least a year).
Shared Responsibility
A sense of shared responsibility and
community was evidence in the study
by Esquivel et al. [33] in the self-
policing of a breast cancer mailing list.
This ethos was also evident in
HeartNET [42] in that the support
group demonstrated a shared
responsibility in dealing collectively
with difficult questions posed by
members.
Interpersonal issues
Not all aspects of online support
groups are positive. Bruwer et al. [32]
indicated that personal interactions
and alternative view points of other
members or the owners of mailing lists
were potential barriers to ongoing
participation. Also, one participant in
Bonniface and Green’s [42]
investigation of HeartNET mentioned a
reticence in sharing her experiences
because she did not want to dwell on
her illness, nor cultivated a ‘victim-like
or competitive environment’ of sharing.

24
eHealth services in use
Certain facilitators and barriers to
eHealth engagement concern the
practical implementation of services:
empowerment, fit with everyday life,
people as enablers, usability and
usefulness, user response and threat
to the patient/doctor relationship.
Fit with everyday life
In Blackburn and Read’s study [6],
circumstantial barriers to Internet use
included lack of time due to caring
(57%) or other circumstances (61%),
and costs associated with telephony
(22%) and equipment (15%). Lack of
available time available at school or in
community centres was reported as an
issue also by Skinner et al. [18], and
cost was cited as an issue in Helft et
al. [16].
However, while time may be an issue,
in a study of 138 questionnaires
completed by attendees at a
rheumatology clinic in Scotland,
Gordon et al. [46] found that 31% of
people felt that using the Internet to
find information about their condition
was easier than asking a doctor or a
nurse. While the study was conducted
some years ago, it is interesting that
none of the participants recalled ever
having been advised by a doctor or
nurse to search the Internet for
information on their diagnosis.
In contrast, in their evaluation of an
asthma telehealth service, Anhoj and
Nielsen [23] found a lack of fit due to
timing and technical and psychological
factors.
Usability and usefulness
In their exploration of health-related
Internet access and use by women in
USA, Bowen [19] reported that of the
21% of participants without Internet
access 1:3 cited cost as a barrier.
However, perceived lack of usefulness
of the Internet as an information
source and unfamiliarity with using the
technology appear to be equally
important reasons. Email was reported
as the most frequently used resource
and the most desired by those without
access.
In exploring the use in the UK of the
Internet in managing health and illness
and engaging with health services,
Rogers and Mead [17] revealed for
some participants a lack of perceived
usefulness and relevance of
information for managing their health
and health care. The study concluded
that access to health information via
the Internet would not guarantee
equity in the use of the Internet to
complement the use of health
services. For participants adept at
using computers and with high
expectations about good outcomes for
information utilisation, Internet
information enabled them to negotiate
better and optimise their contact with
services; it empowered them by
representing a form of authority.
However, for those with less
confidence, services were viewed as
predetermined and they felt unable
through Internet information to alter
negotiations or health matters. For this
group, information was anxiety-
promoting and a source of interference
with established ways of coping.
Usability was seen as a key facilitator
in a study conducted in the USA
exploring the use of the Internet for
health information by 12 adolescent
students [47]. Participants were
observed, using a think-aloud protocol,
as they searched for answers to 6
health-related questions. 69% of
searches were successful, and these
were based on search engine results
(77%, with 83% of links followed

25
appearing in the top 9 results), search
engine recommended links (10%),
links from other pages (7%) and direct
access (5%). Participants avoided
sponsored links and most went only
one page ‘deep’ at most sites. They
used trial-and-error to formulate
searches, scanned pages randomly
rather than systematically, and did not
appear to consider the sources of
content. The authors recommended
that information should be easy-to-find
(including if searches were
misspelled), well organised, concise
and understandable and expressed
the need for education around
searching.
Ease of use was also cited by
participants in the study by Ibrahim
and Boulos [20] with participants being
influenced in their choice of web site
by ease of use (62%) and currency of
content (58%). Only 1:3 participants
were cited as being influenced by
sponsorship or by the qualifications of
the authors of the materials (it is not
stated whether this influence was
positive or negative).
While participants in the study by
Anhoj and Nielsen [23] felt there to be
a lack of fit between the resource and
their everyday lives, hence their
unwillingness to use the resource for
more than short periods, they also
found it simple and easy to use. They
were more inclined to favour its role in
informing rather than advising.
Participants in the study by Glenton et
al. [26] to evaluate research-based
information questioned: a) the
credibility of research; and, b) its
applicability to them as individuals.
Clarity of purpose was also found
lacking in the touch-screen health
information kiosk study by Williams et
al. [15]. Participants in the Glenton et
al. [26] study suspected a bias towards
orthodoxy (and they expressed
frustration over the effectiveness of
treatments presented) and a mistrust
of the health care ‘establishment’.
Some participants found the website
difficult to understand but recognised
the need to familiarise themselves with
medical terms. They recognised that
treatment decisions are often made in
times of pain or despair – and
solutions are often sought from people
rather than from research. Thus there
was enthusiasm towards personal
stories of fellow sufferers in contrast to
the mixed response to research-based
information.
People as enablers
While participants in the study by
Skinner et al. [18] of health information
seeking via the Internet valued
anonymity, they also identified health
and education professionals and
parents both as gatekeepers and
solution enablers. Professionals were
seen as having a role in fostering their
ability to use the Internet effectively
and safely and in recommending
quality web sites. Parents were seen
as having a vested interest more in
terms of keeping them safe rather than
in sponsoring exploration.
van der Meer et al. [45] found that for
people with poor asthma control,
Internet-based monitoring and control
was feasible, was not time consuming,
did not interfere with daily life and was
well-received. They appreciated
receiving messages when their
condition deteriorated and valued
advice on how and when to change
medication. Unlike those with good
asthma control, people with poor
asthma control were able to
incorporate Internet-based asthma
self-management for a long period of
time.

26
In a Canadian study exploring the
value of Internet training sessions,
Edgar et al. [48] found value in one-to-
one training in searching for and
appraising cancer-related information.
The study involved 40 cancer patients
and family members whose views on a
training session delivered by a health
librarian were sought via pre- and
post- questionnaires and by follow-up
phone interview. The teaching
sessions were reported as being well
received and patients felt empowered
and in a better position to ask
questions. At 2 months, the vast
majority felt better able to deal with
cancer as a result of the intervention
(94%) and better able to evaluate
cancer information (84%). 68% had
used the Internet again for cancer
information.
Empowerment
In the study by Sim et al. of health
information seeking via the Internet
[35], while there were issues over
content, 84% of parents found the
Internet useful in developing further an
understanding of their child’s condition.
They also found in the information
obtained, reassurance (37%) and
support (29%) along with possible
diagnoses (15%).
Feelings of competence and control
were expressed in a survey of 2275
participants in a study exploring the
use of a Canadian web site dedicated
to illness prevention and health
promotion [49]. The authors identified
3 forms of empowerment that were
related specifically to Internet use: a
professional form of empowerment
where individuals preferred the point of
view offered by mainstream medicine
over self-exploration; a consumerist
form of empowerment where
individuals take a more participatory
and consumer-focused approach; and
a community form of empowerment
where participation in online
communities can contribute to
personal empowerment.
Fogel et al. [50] found the Internet to
be useful in terms of social support
and in reducing a sense of loneliness.
The USA-based study involved
interviews (with completion of multiple
assessment tools) with 188 women
with breast cancer in the USA. The
authors found that Internet use for
breast health issues was associated
with greater social support and less
loneliness than both Internet use for
other purposes and non-use, with only
a minimal weekly time commitment.
However, the authors pointed out that
those with more social support and
less loneliness might be more likely to
seek out information via the Internet.
Chung and Kim [28] found four
perceived outcomes of blog use
(based on actual gratifications
received rather than merely sought):
management of emotions, information
sharing, problem solving and
prevention and care (in decreasing
order of importance). The results
indicate that active blogging appears
to make for a more useful blogging
experience by allowing users to
express their frustrations, taking
control and presenting their conditions
online.
Motivation
Most participants in the study by
Greenhalgh et al. [14] on attitudes to
the NHS Summary Care Record and
HealthSpace were unaware of the
resources and there appeared to be a
general lack of interest by participants
in their own health. Participants
indicated a lack of perceived
usefulness in the resources; most
were not interested in recording or

27
accessing data from the NHS
Summary Care Record via
HealthSpace but saw some potential in
terms of self-management of chronic
illness. There was also confusion
about what the NHS Summary Care
Record would contain and who would
have access. In weighing up benefits
and drawbacks to having an NHS
Summary Care Record, key factors
included the nature of any illness,
levels of engagement and health
literacy. Perceptions were coloured by
past and present experience of health
care, a fear of government surveillance
and the degree of trust towards the
primary care team and the wider
health service. Interestingly, people
with stigmatising illnesses were more
positive that those claiming to speak
for vulnerable groups such as victims
of domestic violence.

28
Summary and
recommendations arising
from the review
This review considered public
engagement with four types of eHealth
service:
1. Health information on the
Internet
2. Bespoke online health
information
3. Online support
4. Telehealth.
In an early review of health information
on the Internet, Cline and Haynes [51]
characterised access to online health
information in three ways: searching
directly for information (corresponding
in the current review to both ‘Health
information on the Internet’ and
‘Bespoke online health information’),
participating in support groups (i.e.
‘Online support’) and consulting with
health professionals (i.e. ‘Telehealth’).
From the current review, barriers and
facilitators to engagement appear to
fall into one of five categories:
1. Characteristics of users
2. Technological issues
3. Characteristics of eHealth
services
4. Social aspects of use
5. eHealth services in use.
Characteristics of users. The
findings suggest that both increasing
age and low socio-economic status
might be negatively associated with
perceptions and use of eHealth
services. Non-white ethnicity also
appears to be a potential barrier. A
understanding of their child’s
online cancer support groups found
that African Americans were indeed
under-represented (although the
authors note that there is no evidence
to suggest that online support groups
improve health and social outcomes).
The situation concerning engagement
with online support groups becomes
even more complicated when
considering both ethnicity and gender
[53]. There appear to be higher levels
of eHealth service use among people
describing themselves as white and
among people with higher socio-
economic status. Higher levels of
educational attainment and literacy
appear to be associated with
increased awareness and use of
eHealth services. Lack of motivation,
interest and engagement, both in
eHealth services and in health in
general, appear to be barriers to the
use of those services. A lack of
knowledge and skills around computer
or Internet use appears to be a barrier
to the uptake of eHealth services, as
confirmed by Cline and Haynes [51].
However, exposure to these services
appears to improve both the
perceptions of non-users and
frequency of use. Both health status
and information needs play a less
predictable role in engagement with
eHealth services. For example, poor
health status provides an impetus for
individuals to seek information.
However, poor health status may also
inhibit an individual’s ability and
motivation to seek this type of support.
Trust also appears to influence users’
perceptions of eHealth services,
although it doesn’t necessarily affect
patterns of use. For example, opinion
towards ‘scientific’ sources and
researchers appears to be mixed.
Trust was identified as a significant
issue also in the literature review by
Fogel et al. [52]

29
Technological issues. Unsurprisingly,
lack of access and poor access to
computers and/or the Internet are
significant barriers to engagement with
eHealth services. Simply put, those
with better access (particularly at
home) are more likely to engage with
services. Cline and Haynes [51] also
recognised that access is inequitable.
However, having good access does
not guarantee use. Perceptions of
users are also dependant on
operational aspects of the service
along with how it handles data security
and privacy, as supported by a recent
literature review by Botsis and
Hartvigsen of telecare for older people
[54]. Interestingly, security and privacy
concerns did not feature highly in
many of the articles included in the
current review. Design features were
an important consideration also in the
Cline and Haynes review [51].
Characteristics of eHealth services.
As might be expected, and as
supported by Cline and Haynes [51]
the content of eHealth services is an
important contributing factor to
engagement. Important characteristics
include: quantity, relevance (including
cultural relevance), comprehensibility
(both technical and linguistic),
reliability and impartiality, navigability,
flexibility and tailoring of content.
Cultural relevance was also identified
as important by Fogel in a literature
review on ethnicity and literacy levels
and Internet use for cancer information
[55].
Social aspects of use. A decreased
sense of isolation is seen by many as
an important benefit of eHealth
services, along with autonomy and an
increased sense of control. Anonymity
is also valued, although the impersonal
nature of online communication might
in some circumstances act as a
barrier. Cline and Haynes [51] also
acknowledged both a ‘shifting balance
of informational power’ and the
potential benefits of anonymity.
People are often seen as important
adjuncts to certain eHealth services:
as gatekeepers, as enablers, as
trainers and as coaches. A literature
review conducted by McMullan [56] on
the impact of Internet use on the
patient-health professional relationship
suggests three ways in which health
professionals may respond to their
patients as active consumers of health
information: 1) re-assert their role as
expert, 2) collaborate in obtaining and
analysing information, 3) guide
patients to reliable resources. There
appears to still be a place for direct
face-to-face communication. To
support this, Botsis and Hartvigsen
[54] found that ‘patients and nurses
foresee the need for real nurse home
visits along with telemedicine ones’.
Social computing (e.g. online
discussion and support groups) is
generally seen in a positive light by
providing a ‘safe’, flexible and personal
environment in which to share
experiences and responsibility, foster a
sense of belonging, offer empathy and
support and gain reassurance. The
review by McMullan made a similar
observation [56]. Active engagement
appears to reap the most benefit.
eHealth services in use. Issues
affecting engagement with eHealth
services arise from their
implementation and use. An obvious
barrier concerns ease of use. An
equally obvious barrier is lack of fit
with everyday life in terms of time, cost
and technical or psychological factors
e.g. unfamiliarity with the resource. A
lack of perceived usefulness or
relevance is a significant barrier to
engagement with eHealth services.
Certain potential users of eHealth

30
services believe that information will
make little impact on the status quo
and may actually be a burden. Other
users find eHealth services
empowering, reassuring and
supportive.
In light of the findings of this review,
there are a number of
recommendations:
• There should be targeted efforts
to engage those who are
underserved by eHealth
services due to age, ethnicity,
educational attainment and
socioeconomic status
• Attempts should be made to
maximise exposure to eHealth
services across all sections of
society, in order to increase
familiarity and improve
perceptions of usefulness and
relevance, thereby maximising
potential use
• Maximising exposure to eHealth
services includes improved
access to computers and the
Internet
• There should be a continued
focus on the appropriate design
and delivery of eHealth services
in terms of ease of use and fit
with everyday life i.e. time and
cost
• Efforts should be made to
ensure that the content of
eHealth services meets the
needs of the target audience for
those services (perhaps through
a balance between quality
criteria for content and
information skills training for
users). Content should be
understandable, relevant and
trustworthy to a wide variety of
potential users
• eHealth services should
capitalise on the continued
public interest in social
computing and allow users of
those services to reap the
benefits of online community
engagement
• The role of health workers in the
delivery of eHealth services,
including endorsement and
facilitation, should be clarified.

31
Appendix A – Search strategies
MEDLINE (via OVID)
1. Information Systems/
2. Internet/
3. Medical Informatics Applications/
4. Medical Records Systems, Computerized/
5. Telemedicine/
6. 1 or 2 or 3 or 4 or 5
7. Attitude to Computers/
8. Public Opinion/
9. Computer Literacy/
10. Longitudinal Studies/
11. Patient Satisfaction/
12. Program Evaluation/
13. Questionnaires/
14. Interviews as Topic/
15. Focus Groups/
16. 7 or 8 or 9 or 10 or 11 or 12 or 13 or 14 or 15
17. Access to Information/
18. "Appointments and Schedules"/
19. Choice Behavior/
20. Consumer Health Information/
21. Health Education/
22. Information Services/

32
23. "Referral and Consultation"/
24. Self Care/
25. "Delivery of Health Care"/
26. Patient Education as Topic/
27. 17 or 18 or 19 or 20 or 21 or 22 or 23 or 24 or 25 or 26
28. 6 and 16 and 27
Key: / = MeSH Heading

33
CINAHL (via EBSCOhost)
S1 (MH "Information Systems")
S2 (MH "Internet")
S3 (MH "Medical Informatics")
S4 (MH "Patient Record Systems")
S5 (MH "Telemedicine")
S6 S5 or S4 or S3 or S2 or S1
S7 (MH "Attitude to Computers")
S8 (MH "Public Opinion")
S9 (MH "Computer Literacy")
S10 (MH "Prospective Studies")
S11 (MH "Questionnaires")
S12 (MH "Interviews+")
S13 (MH "Focus Groups")
S14 S13 or S12 or S11 or S10 or S9 or S8 or S7
S15 (MH "Access to Information")
S16 (MH "Appointment and Scheduling Information Systems")
S17 (MH "Consumer Health Information")
S18 (MH "Health Education")
S19 (MH "Information Services")
S20 (MH "Referral and Consultation")
S21 (MH "Self Care")
S22 (MH "Health Care Delivery")
S23 (MH "Patient Education")
S24 S23 or S22 or S21 or S20 or S19 or S18 or S17 or S16 or S15
S25 S24 and S14 and S6
Key: MH = MeSH Heading
+ = Explode MeSH heading to include all sub-headings

34
EMBASE (via the National Library for Health – now NHS Evidence)
1. INFORMATION SYSTEM/
2. INTERNET/
3. MEDICAL INFORMATICS/
4. ELECTRONIC MEDICAL RECORD/
5. DECISION MAKING/
6. TELEMEDICINE/
7. 1 OR 2 OR 3 OR 4 OR 5 OR 6
8. PATIENT SATISFACTION/
9. ATTITUDE TO COMPUTERS/
10. PUBLIC OPINION/
11. HUMAN COMPUTER INTERACTION/
12. LONGITUDINAL STUDY/
13. QUESTIONNAIRE/
14. exp INT ERVIEW/
15. 8 OR 9 OR 10 OR 11 OR 12 OR 13 OR 14
16. ACCESS TO INFORMATION/
17. CONSUMER HEALTH INFORMATION/
18. HEALTH EDUCATION/
19. INFORMATION SERVICE/
20. PATIENT REFERRAL/
21. SELF CARE/
22. HEALTH CARE DELIVERY/
23. PATIENT EDUCATION/
24. 16 OR 17 OR 18 OR 19 OR 20 OR 21 OR 22 OR 23
25. 7 AND 15 AND 24
Key: / = MeSH Heading
exp = Explode MeSH heading to include all sub-headings

35
Appendix B – Data Extraction Tool
Bibliographic details:
What was the eHealth service? ---
• Named/Identifiable:
• Purpose:
Study design ---
• Who was involved/used
the eHealth service?
• (Older people; learning
disabilities; social groups
D&E; COPD; Diabetes)
• Number of participants
and comparison groups
• Data collection/Analysis
methods:
• Over what timescale?
• Findings:
What were the eHealth service
outcomes?
---
• Barriers:
• Facilitators/Motivators:
Other comments:
Reviewer:
Review date:

36
Appendix C – Lower level and intermediate content themes
Access to information
Access to information
Information about treatments and follow up
Access to resource
Internet access
Lack of Internet access
Lack of access to computers
Owning a PC
Age
Older people found the web site less user friendly
Old age
Belonging
Sense of reassurance from an empathic community
Shared experience
Finding support
A safe and non-judgemental environment
Content issues
Difficulty using materials
Use of a range of media
Tailoring of information according to information need
Flexibility and accessing information
Internet sites are culture specific
Language specific web sites
Internet sites difficult for lay people to understand
Content - appropriate for audience

37
Educational attainment
Low educational attainment
High educational attainment
Empowerment
Empowerment
For empowerment, reassurance, support, understanding
Ethnicity
Ethnicity - Asian
Ethnicity – white
Fit with everyday life
Lack of fit with everyday lives
Not time consuming
Did not interfere with activities of daily living
Lack of time
Cost
Convenience
Health status
Nature of illness
Poor mental health
High perceptions of health
Low health status
Information needs
Different needs
Interpersonal issues
Negative online competition for attention
Disagreements
Literacy levels
Low literacy levels
High health literacy

38
Miscellaneous
Use of metaphors
Threat to the patient/doctor relationship
Involvement in development
Being a carer
Motivation
Lack of interest in own health
Lack of curiosity/interest in resource
Degree of engagement
Lack of interest
Openness to experience
Belief that information will make a difference to health
Operational issues
Lack of moderation
Timing of session
Large numbers of messages
Loss of discussion thread
Deviation of topic
People as enablers
One-to-one teaching
People as enablers
Physical distance
Absence of physical contact made it easier to begin discussions
Anonymity
Perceived additional benefits of face-to-face consultations
Impersonal
Reassurance
Presence of GP in teleconsultation
Reassurance

39
Security and privacy
Security
Invasion of Privacy
Shared experience
Access to experience based knowledge e.g. personal stories
Sharing information
Use of experience based knowledge e.g. personal stories
Shared responsibility
Dealing collectively with difficult questions
Self police and self correction
Skills and knowledge
Prior exposure
Lack of skill/Not knowing how to use computers or the Internet
Difficulties finding information
Not knowing relevant information/resources available
Lack of Internet use
Familiarity with the Internet
Social contact
Breaks down social isolation
Social interaction
Socio-economic status
Low socio-economic status
High socioeconomic status
Technological issues
The Internet
Technical issues

40
Trust
Perceptions of blogs as credible
Negative prior experience
Lack of trust in research
Concerns over content and reliability
Openness/trust in sources
Scientific basis for information
Usability and usefulness
Simplicity and ease of use
Utility
Lack of clarity of purpose
Lack of perceived usefulness
Lack of applicability
Perceived lack of utility of Internet
Well-organised web sites
Ease of use
Content - currency
Adaptable searching e.g. allow for spelling mistakes
User response
Informing rather than advising
Access to advice and how and when to change medication

41
Appendix D – Intermediate and overarching content
themes
Characteristics of users
Age
Being a carer
Educational attainment
Ethnicity
Health status
Information needs
Literacy levels
Motivation
Skills and knowledge
Socio-economic status
Trust
Technological aspects
Access to resource
Involvement in development
Operational issues
Security and privacy
Technological issues
Use of metaphors
Characteristics of eHealth services
Access to information
Content issues
Physical distance

42
Social aspects of use
Belonging
Interpersonal issues
Reassurance
Shared experience
Shared responsibility
Social contact
eHealth services in use
Empowerment
Fit with everyday Life
People as enablers
Threat to the patient/doctor relationship
Usability and usefulness
User response

43
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46
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