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

Factors that affect public
engagement with eHealth services:
a literature review
Nicholas R Hardiker
Maria J Grant
School of Nursing
June 2009
Dr. Nicholas Hardiker
Senior Research Fellow, School of Nursing
Room MS 2.29, Mary Seacole Building
The University of Salford
Greater Manchester
M6 6PU
Tel: +44 (0)161 295 7013
© University of Salford
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
Nick acted as principal investigator for
this review and was jointly responsible
for searching, filtering, appraising and
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
Maria acted as co-investigator for this
review and was jointly responsible for
searching, filtering, appraising and
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.
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
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
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
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
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.
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
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
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
The findings of this review are
supported to a large extent by other
earlier literature reviews.
Recommendations arising from the
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.
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
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,
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
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
2) Allocation of relevant keywords
(Medical Subject Headings i.e.
MeSH) into three categories
(combined with AND):
a. Computer application
e.g. Internet,
Information Systems
b. Evaluation e.g. Patient
Satisfaction, Attitude to
Computers, Focus
c. Health service e.g. Self
Care, Referral and
Consultation, Information
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
The intention was to retrieve items that
included an application, a service and
an evaluation. Searches were
purposefully not restricted by date. All
searches were carried out in January
2009 (see Appendix A for search
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
Readily and freely available
online i.e. open access or
available via the University of
Salford e-library of online
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
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
The tool allowed the team to analyse
articles into the following categories:
Bibliographic details
eHealth service (including
Study design
o Participants (types of
users, numbers of
participants, comparison
o Methods of data
collection and analysis
o Timescale
Reviewer and review date
Emergent themes that were common
across different studies were identified
through a face-to-face meeting.
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
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.
Characteristics of users
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 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
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
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
(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
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,
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
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.
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
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
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 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.
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
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.
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
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.
Characteristics of eHealth
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
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
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
Dickerson [24] also found contact with
other people in a similar position and
sharing experiences first-hand to be
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-
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.
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.
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
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
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.
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
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.
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
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
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
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
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
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
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
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
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
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.
Summary and
recommendations arising
from the review
This review considered public
engagement with four types of eHealth
1. Health information on the
2. Bespoke online health
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
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]
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
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
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
In light of the findings of this review,
there are a number of
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
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
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
The role of health workers in the
delivery of eHealth services,
including endorsement and
facilitation, should be clarified.
Appendix A – Search strategies
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/
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
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
EMBASE (via the National Library for Health – now NHS Evidence)
7. 1 OR 2 OR 3 OR 4 OR 5 OR 6
14. exp INT ERVIEW/
15. 8 OR 9 OR 10 OR 11 OR 12 OR 13 OR 14
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
Appendix B – Data Extraction Tool
Bibliographic details:
What was the eHealth service? ---
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
Over what timescale?
What were the eHealth service
Other comments:
Review date:
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
Older people found the web site less user friendly
Old age
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
Educational attainment
Low educational attainment
High educational attainment
For empowerment, reassurance, support, understanding
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
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
Literacy levels
Low literacy levels
High health literacy
Use of metaphors
Threat to the patient/doctor relationship
Involvement in development
Being a carer
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
Perceived additional benefits of face-to-face consultations
Presence of GP in teleconsultation
Security and privacy
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
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
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
Appendix D – Intermediate and overarching content
Characteristics of users
Being a carer
Educational attainment
Health status
Information needs
Literacy levels
Skills and knowledge
Socio-economic status
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
Social aspects of use
Interpersonal issues
Shared experience
Shared responsibility
Social contact
eHealth services in use
Fit with everyday Life
People as enablers
Threat to the patient/doctor relationship
Usability and usefulness
User response
Included articles
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Using the Internet? The experiences of
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source of health information in three
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12. Gustafson, D.H., et al., CHESS:
10 years of research and development
in consumer health informatics for
broad populations, including the
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window on adolescent health literacy.
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37(3): p. 243.
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and HealthSpace: qualitative study.
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336(7656): p. 1290-1295.
15. Williams, P., D. Nicholas, and
P. Huntington, Non use of health
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20(2): p. 95-103.
16. Helft, P.R., et al., Use of the
Internet to obtain cancer information
among cancer patients at an urban
county hospital. Journal of Clinical
Oncology, 2005. 23(22): p. 4954-4962.
17. Rogers, A. and N. Mead, More
than technology and access: primary
care patients' views on the use and
non-use of health information in the
Internet age. Health & Social Care in
the Community, 2004. 12(2): p. 102-
18. Skinner, H., S. Biscope, and B.
Poland, Quality of internet access:
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19. Bowen, D., Predictors of
women's Internet access and Internet
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Women International, 2003. 24(10): p.
20. Ibrahim, E.M. and M.N.K.
Boulos, Access to online information
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p. 11p.
21. Eminovic, N., et al., First
evaluation of the NHS direct online
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22. Houston, T.K. and J.J. Allison,
Users of internet health information:
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p. 10-24.
23. Anhoj, J. and L. Nielsen,
Quantitative and qualitative usage data
of an internet-based asthma
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24. Dickerson, S.S., Technology-
patient interactions: Internet use for
gaining a healthy context for living with
an implantable cardioverter
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25. Khechine, H., D. Pascot, and P.
Premont, Use of health-related
information from the Internet by
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26. Glenton, C., E.S. Nilsen, and B.
Carlsen, Lay perceptions of evidence-
based information--a qualitative
evaluation of a website for back pain
sufferers. BMC Health Services
Research, 2006. 6: p. 34.
27. Khoo, K., et al., Health
information seeking by parents in the
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28. Chung, D.S. and S. Kim,
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29. Pennbridge, J., R. Moya, and L.
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30. Andreassen, H.K., et al.,
European citizens' use of E-health
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31. Boukhors, Y., et al., The use of
information technology for the
management of intensive insulin
therapy in type 1 diabetes mellitus.
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p. 619-27.
32. Bruwer, B.R. and D.J. Stein, A
survey of participants in two internet
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pulling. BMC Psychiatry, 2005. 5: p.
33. Esquivel, A., F. Meric-
Bernstam, and E.V. Bernstam,
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analysis.[see comment]. BMJ, 2006.
332(7547): p. 939-42.
34. Gough, M.D., et al., Barrett's
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Internet. The patient's perspective.
Diseases of the Esophagus, 2003.
16(2): p. 57-9.
35. Sim, N.Z., et al., Information on
the World Wide Web--how useful is it
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36. Allen, M., et al., Improving
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57(2): p. 107-112.
37. Bernhardt, J.M. and E.M. Felter,
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among mothers of young children:
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Internet Research, 2004. 6(1): p. e7.
38. Diefenbach, M.A. and B.P.
Butz, A multimedia interactive
education system for prostate cancer
patients: Development and preliminary
evaluation. Journal of Medical Internet
Research, 2004. 6(1): p. 25-31.
39. Buchanan, H. and N.S.
Coulson, Accessing dental anxiety
online support groups: an exploratory
qualitative study of motives and
experiences. Patient Education &
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40. Hoybye, M.T., C. Johansen,
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internet breast cancer support group.
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the HeartNET website. Health
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24 Suppl 1: p. 67-76.
43. Frost, J.H. and M.P. Massagli,
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44. Harrison, R., et al., Patients'
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a resource for health information
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48. Edgar, L., A. Greenberg, and J.
Remmer, Providing Internet lessons to
oncology patients and family
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Supporting literature reviews
51. Cline, R.J. and K.M. Haynes,
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on the Internet: the state of the art.
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16(6): p. 671-92.
52. Fogel, J., et al., The
Underrepresentation of African
Americans in Online Cancer Support
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53. Im, E.-O. and W. Chee, The use
of Internet cancer support groups by
ethnic minorities. Journal of
Transcultural Nursing, 2008. 19(1): p.
54. Botsis, T. and G. Hartvigsen,
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from chronic diseases. Journal of
Telemedicine & Telecare, 2008. 14(4):
p. 195-203.
55. Fogel, J., Internet Use for
Cancer Information Among
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... This decrease in adherence may be related to the fact that completing pain assessments within 30 minutes of the scheduled time may be difficult to attain or sustain for many children and families but may also reflect other important differences, such as the characteristics of the community-based sample. Hardiker and Grant [43] reviewed factors that influence public engagement with electronic health (eHealth) and found that among adults, engagement with eHealth can vary significantly based on individual characteristics including age, disease severity, motivation to improve one's own health, and the belief that the intervention will improve one's health [43]. The majority of children in our study were in remission, and while pain can remain an issue for childhood cancer survivors, it is often significantly lower in intensity than children who are in active treatment [7,44]. ...
... This decrease in adherence may be related to the fact that completing pain assessments within 30 minutes of the scheduled time may be difficult to attain or sustain for many children and families but may also reflect other important differences, such as the characteristics of the community-based sample. Hardiker and Grant [43] reviewed factors that influence public engagement with electronic health (eHealth) and found that among adults, engagement with eHealth can vary significantly based on individual characteristics including age, disease severity, motivation to improve one's own health, and the belief that the intervention will improve one's health [43]. The majority of children in our study were in remission, and while pain can remain an issue for childhood cancer survivors, it is often significantly lower in intensity than children who are in active treatment [7,44]. ...
Full-text available
Background Pain Squad is an evidence-based, freely available iOS app designed to assess pain in children with cancer. Once research-based technologies such as Pain Squad are validated, it is important to evaluate their performance in natural settings to optimize their real-world clinical use. Objective The objective of this study was to evaluate the implementation effectiveness of Pain Squad in a natural setting. Methods Parents of 149 children with cancer (aged 8-18 years) were contacted to invite their child to participate. Participating children downloaded Pain Squad on their own iOS devices from the Apple App Store and reported their pain using the app twice daily for 1 week. Participants then emailed their pain reports from the app to the research team and completed an online survey on their experiences. Key implementation outcomes included acceptability, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. Results Of the 149 parents contacted, 16 of their children agreed to participate. More than a third (6/16, 37.5%) of participating children returned their pain reports to the research team. Adherence to the pain assessments was 62.1% (mean 8.7/14 assessments). The 6 children who returned reports rated the app as highly feasible to download and use and rated their overall experience as acceptable. They also reported that they would be willing to sustain their Pain Squad use over several weeks and that they would recommend it to other children with cancer, which suggests that it may have potential for penetration. Conclusions While Pain Squad was well received by the small number of children who completed the study, user uptake, engagement, and adherence were significant barriers to the implementation of Pain Squad in a natural setting. Implementation studies such as this highlight important challenges and opportunities for promoting the use and uptake of evidence-based technologies by the intended end-users.
... Various computer-tailored eHealth interventions have demonstrated that personalizing the content to the characteristics of individual users tend to be efficacious for promoting healthy behaviors [4,6,7], though engaging the unmotivated proportion of the population, not actively interested in their health, is always challenging [8]. The common tailoring variables found in eHealth or mHealth interventions are health behaviors and the readiness to change behavior [9,10], and some have also considered demographics, clinical risk factors, and personal information needs [11]. ...
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Background: Understanding the relationship between personal values, well-being, and health-related behavior could facilitate the development of engaging, effective digital interventions for promoting well-being and the healthy lifestyles of citizens. Although the associations between well-being and values have been quite extensively studied, the knowledge about the relationship between health behaviors and values is less comprehensive. Objective: The aim of this study was to assess retrospectively the associations between self-reported values and commitment to values combined with self-reported well-being and health behaviors from a large cross-sectional dataset. Methods: We analyzed 101,130 anonymous responses (mean age 44.78 years [SD 13.82]; 78.88%, 79,770/101,130 women) to a Finnish Web survey, which were collected as part of a national health promotion campaign. The data regarding personal values were unstructured, and the self-reported value items were classified into value types based on the Schwartz value theory and by applying principal component analysis. Logistic and multiple linear regression were used to explore the associations of value types and commitment to values with well-being factors (happiness, communal social activity, work, and family-related distress) and health behaviors (exercise, eating, smoking, alcohol consumption, and sleep). Results: Commitment to personal values was positively related to happiness (part r2=0.28), communal social activity (part r2=0.09), and regular exercise (part r2=0.06; P<.001 for all). Health, Power (social status and dominance), and Mental balance (self-acceptance) values had the most extensive associations with health behaviors. Regular exercise, healthy eating, and nonsmoking increased the odds of valuing Health by 71.7%, 26.8%, and 40.0%, respectively (P<.001 for all). Smoking, unhealthy eating, irregular exercise, and increased alcohol consumption increased the odds of reporting Power values by 27.80%, 27.78%, 24.66%, and 17.35%, respectively (P<.001 for all). Smoking, unhealthy eating, and irregular exercise increased the odds of reporting Mental balance values by 20.79%, 16.67%, and 15.37%, respectively (P<.001 for all). In addition, lower happiness levels increased the odds of reporting Mental balance and Power values by 24.12% and 20.69%, respectively (P<.001 for all). Conclusions: The findings suggest that commitment to values is positively associated with happiness and highlight various, also previously unexplored, associations between values and health behaviors.
... The rise of social media has resulted in many patients no longer relying on information just being given; they like to be part of the information production process by offering solutions to problems, comments and sharing their experiences (Adams, 2011;Hardiker and Grant, 2011;Lober and Flowers, 2011). This does not come as a surprise as health professionals' time to respond to patients' queries during a typical interaction is limited (Haase and Loiselle, 2012). ...
BACKGROUND The number of people living with a long-term condition is set to increase in England and globally. The rise of social media enables patient networking, communication and information sharing, thus bringing significant opportunities in terms of satisfying information need and positive outcomes within the healthcare arena, particularly for those with long-term conditions (LTC). OBJECTIVE This paper explores the creation and use of a co-designed online network using a range of social media platforms to meet the health information needs and improve health and social outcomes in a group of patients with a LTC. METHODS Longitudinal in-depth study involving: A person-centred approach and co-creation of a moderated platform with Chronic Kidney Disease (CKD) patients and specialist kidney health practitioners; observation of platform use; 14 self-efficacy surveys (baseline and 6 months); 14 semi-structured interviews (at baseline and 6 months). RESULTS Multiple platforms were needed to engage patients at different levels, which contributed to information generation. This satisfied information need and triggered positive health and social outcomes. Satisfaction of information needs through social engagement influenced self-efficacy (in the majority of participants) and better self-care and management of illness. Unique to this study, social outcomes were identified, which included seeking employment and an increase in social capital. CONCLUSIONS A co-created, multiplatform social media intervention has the potential to meet patient information needs and improve health and social outcomes in a sustainable manner.
... Indeed, many challenges and questions related to the relation of individuals to technology are increasingly reported in the literature, such as quality of the services, clinical outcomes for patients, health and digital literacy, security and confidentiality issues, intrusion into the private life, medicalization of the living environment, depersonalization of the patient-clinician relationship, social and cultural relevance, and increase of inequalities on socioeconomic or geographic bases. In this respect, many questions are raised about the potential negative, intended or unintended, consequences of the use of information and communication technologies in health care (health-ICTs) on individuals and communities [12][13][14][15]32,[61][62][63][64][65][66]. These questions can no longer be treated by experts within the health system in a way that is disconnected from the expectations and concerns of citizen-patients. ...
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Background: Decisions regarding telehealth services in Quebec (Canada) have been largely technocratic by nature for the last 15 years, and the involvement of citizen-patients in the development of telehealth services is virtually nonexistent. In view of the societal challenges that telehealth raises, citizen-patient involvement could ensure more balance between evidence from traditional research methodologies and technical experts and the needs and expectations of populations in decisions about telehealth services. Objective: This study aimed to explore the perception of various stakeholders (decision makers, telehealth program and policy managers, clinicians, researchers, evaluators, and citizen-patients) regarding the involvement of citizen-patients in the development of telehealth services in Quebec. In particular, we explored its potential advantages, added value, obstacles, and challenges it raises for decision making. Methods: We used a qualitative research approach based on semistructured individual interviews, with a total of 29 key actors. Respondents were identified by the contact network method. Interviews were recorded and transcribed verbatim. A pragmatic content thematic analysis was performed. To increase the capacity for interpretation and analysis, we were guided by the principle of data triangulation. Results: Citizen-patient involvement in decision making is perceived more as a theoretical idea than as a practical reality in health care organizations or in the health system. There is very little connection between citizen involvement structures or patient and user groups and telehealth leaders. For the respondents, citizen-patient involvement in telehealth could increase the accountability and transparency of decision making and make it more pragmatic within an innovation-driven health system. This involvement could also make citizen-patients ambassadors and promoters of telehealth and improve the quality and organization of health services while ensuring they are more socially relevant. Challenges and constraints that were reported include the ambiguity of the citizen-patient, who should be involved and how, claimant citizen-patient, the risk of professionalization of citizen-patient involvement, and the gap between decision time versus time to involve the citizen-patient. Conclusions: This study provides a basis for future research on the potential of involving citizen-patients in telehealth. There is a great need for research on the issue of citizen-patient involvement as an organizational innovation (in terms of decision-making model). Research on the organizational predisposition and preparation for such a change becomes central. More efforts to synthesize and translate knowledge on public participation in decision making in the health sector, particularly in the field of technology development, are needed.
... Indeed, many challenges and questions related to the relation of individuals to technology are increasingly reported in the literature, such as quality of the services, clinical outcomes for patients, health and digital literacy, security and confidentiality issues, intrusion into the private life, medicalization of the living environment, depersonalization of the patient-clinician relationship, social and cultural relevance, and increase of inequalities on socioeconomic or geographic bases. In this respect, many questions are raised about the potential negative, intended or unintended, consequences of the use of information and communication technologies in health care (health-ICTs) on individuals and communities [12][13][14][15]32,[61][62][63][64][65][66]. These questions can no longer be treated by experts within the health system in a way that is disconnected from the expectations and concerns of citizen-patients. ...
... Previous studies showed that patients' characteristics (with the exception of age) rarely predict trust in patient-doctor relationships [39]. On the other hand, others have identified patient characteristics such as age, ethnicity, income status, educational level and literacy levels as crucial factors affecting the use of eHealth [40] [18]. Yet, in light of discrepant findings, further research is needed to clarify the underlying effects of sociodemographic factors in digital health. ...
BACKGROUND Information and communication technologies have long become prominent components of health systems. Rapid advances in digital technologies and data science over the last few years are predicted to have a vast impact on health care services, configuring a paradigm shift into what is now commonly referred to as digital health. Forecasted to curb rising health costs as well as to improve health system efficiency and safety, digital health success heavily relies on trust from professional end users, administrators, and patients. Yet, what counts as the building blocks of trust in digital health systems has so far remained underexplored. OBJECTIVE The objective of this study was to analyze what relevant stakeholders consider as enablers and impediments of trust in digital health. METHODS We performed a scoping review to map out trust in digital health. To identify relevant digital health studies, we searched 5 electronic databases. Using keywords and Medical Subject Headings, we targeted all relevant studies and set no boundaries for publication year to allow a broad range of studies to be identified. The studies were screened by 2 reviewers after which a predefined data extraction strategy was employed and relevant themes documented. RESULTS Overall, 278 qualitative, quantitative, mixed-methods, and intervention studies in English, published between 1998 and 2017 and conducted in 40 countries were included in this review. Patients and health care professionals were the two most prominent stakeholders of trust in digital health; a third—health administrators—was substantially less prominent. Our analysis identified cross-cutting personal, institutional, and technological elements of trust that broadly cluster into 16 enablers (altruism, fair data access, ease of use, self-efficacy, sociodemographic factors, recommendation by other users, usefulness, customizable design features, interoperability, privacy, initial face-to-face contact, guidelines for standardized use, stakeholder engagement, improved communication, decreased workloads, and service provider reputation) and 10 impediments (excessive costs, limited accessibility, sociodemographic factors, fear of data exploitation, insufficient training, defective technology, poor information quality, inadequate publicity, time-consuming, and service provider reputation) to trust in digital health. CONCLUSIONS Trust in digital health technologies and services depends on the interplay of a complex set of enablers and impediments. This study is a contribution to ongoing efforts to understand what determines trust in digital health according to different stakeholders. Therefore, it offers valuable points of reference for the implementation of innovative digital health services. Building on insights from this study, actionable metrics can be developed to assess the trustworthiness of digital technologies in health care.
... Ultimately, the EEW can help to improve unacceptable technology or features that work detrimental for end-user acceptance, and can thereby prevent a mismatch between the needs and expectations of end-users on the one hand, and technological functions on the other. A mismatch that is generally considered to be a significant threat towards the success of eHealth [43,44]. We hope that this article has inspired other researchers to use the EEW as well, and we look forward to learning from their experiences with the method. ...
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Background Studies that focus on the acceptance of an electronic health (eHealth) technology generally make use of surveys. However, results of such studies hold little value for a redesign, as they focus only on quantifying end-user appreciation of general factors (eg, perceived usefulness). Objective We present a method for understanding end-user acceptance of an eHealth technology, early in the development process: The eHealth End-User Walkthrough. Methods During a walkthrough, a participant is guided by using the technology via a scenario, a persona, and a low-fidelity protoype. A participant is questioned about factors that may affect acceptance during and after the demonstration. We show the value of the method via two case studies. Results During the case studies, participants commented on whether they intend to use a technology and why they would (not) use its main features. They also provided redesign advice or input for additional functions. Finally, the sessions provide guidance for the generation of business models and implementation plans. Conclusions The eHealth End-User Walkthrough can aid design teams in understanding the acceptance of their eHealth application in a very early stage of the design process. Consequently, it can prevent a mismatch between technology and end-users’ needs, wishes and context.
... This may lead to quality improvements and a higher priority for those patients who need face-to-face visits the most. A literature review by Hardiker and Grant [66] showed that the use of different Web-based services depended on a number of factors such as the characteristics of users, the kinds of technological issues, characteristics of the digital health services social aspects of users, and the digitized services in use. This requires health care professionals to concentrate their efforts where they are needed most, by tailoring services to meet the needs of a broad range of users. ...
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Background: Digital health services are increasing rapidly worldwide. Strategies to involve patients in self-monitoring of type 2 diabetes (T2D) on a daily basis is of crucial importance, and there is a need to optimize the delivery of care such as self-management support. Digitalized solutions have the potential to modify and personalize the way in which people use primary health services, both by increasing access to information and providing other forms of support at a distance. It is a challenge to integrate core values of person-centered care into digitalized health care services. Objective: The objective of this study was to describe perceptions of using electronic health (eHealth) services and related technologies for self-management support among people with T2D treated in Swedish primary health care. Methods: This is a qualitative study based on interviews analyzed using qualitative content analysis conducted among people diagnosed with T2D. Results: Findings suggest that the participants had mixed feelings regarding the use of digital health services for self-management support. They experienced potentials such as increased involvement, empowerment, and security, as well as concerns such as ambivalence and uncertainty. Conclusions: Digital health services for self-management are easily accessible and have the potential to reach a wide population. However, targeted training to increase digital skills is required, and personalized devices must be adapted and become more person-centered to improve patients' involvement in their own care.
... The rise of social media has resulted in many patients no longer relying on information just being given; they like to be part of the information production process by offering solutions to problems, comments and sharing their experiences (Adams, 2011;Hardiker and Grant, 2011;Lober and Flowers, 2011). This does not come as a surprise as health professionals' time to respond to patients' queries during a typical interaction is limited (Haase and Loiselle, 2012). ...
New technological developments affect almost every sector of our daily lives including the healthcare sector. Successful adoption and sustainable integration of eHealth and telemedicine in Public Health strategies (also known as Public eHealth) depend on knowledge and constant evaluation of consumers’ needs, proficiencies, and preferences. We therefore assessed how the general Austrian population perceived innovative Public eHealth solutions. The online survey on 562 Austrian adults (58.9% females) collected self-reported data on current and expected use of smartphone-based health applications (apps) of digital natives (35 years and younger) and digital immigrants (aged 35+). In total, 26.7% (95% CI 23.0–30.4) of participants already used health apps, especially lifestyle-associated apps for monitoring exercise habits and nutritional habits. We found substantial digital age group differences; compared to digital immigrants digital natives were more likely to use mobile devices and health apps. Health apps have the potential to improve community health and prevent lifestyle diseases cost-effectively and efficiently, and thus build an important pillar of Public eHealth. With regard to aging societies, healthcare providers could take advantage of consumer-oriented health apps by assessing individual needs of specific target groups such as elderly people.
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A random, population-based sample of 431 women aged 18–74 in King County, Washington, USA, completed a survey module on Internet use and access. Level of mental health, level of general health perceptions, older age, and higher income predicted women's health-related Internet use. Participants without access reported various barriers to obtaining access; perceived lack of usefulness of the Internet as an information source and unfamiliarity with using this technology appear equally important reasons as financial cost for not adopting the Internet. Internet use motivators are complex; these findings have relevance to the design of Internet-based interventions.
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The proportion of Saudi cancer patients who utilize online information resources is unknown; therefore, this project was designed to characterize Internet utilization by this group. Saudi cancer patients who met defined eligibility criteria responded to a questionnaire to examine Internet utilization, barriers to access, and information needs. Of the 150 patients included, only 19 (13%) used the Internet to receive online information. From patients' perspectives, inability to use a computer (57%), limited English language proficiency (55%), and not knowing about online resources (44%) were the most frequent barriers. A multivariate analysis showed that owning a personal computer was the only variable that distinguished Internet users from nonusers. This study provides the only available data concerning access to Internet information by cancer patients in Saudi Arabia. The study showed that the access rate is unacceptably low due to several barriers. Prompted by the study results, pragmatic recommendations are provided.
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European citizens are increasingly being offered Internet health services. This study investigated patterns of health-related Internet use, its consequences, and citizens' expectations about their doctors' provision of e-health services. Representative samples were obtained from the general populations in Norway, Denmark, Germany, Greece, Poland, Portugal and Latvia. The total sample consisted of 7934 respondents. Interviews were conducted by telephone. 44 % of the total sample, 71 % of the Internet users, had used the Internet for health purposes. Factors that positively affected the use of Internet for health purposes were youth, higher education, white-collar or no paid job, visits to the GP during the past year, long-term illness or disabilities, and a subjective assessment of one's own health as good. Women were the most active health users among those who were online. One in four of the respondents used the Internet to prepare for or follow up doctors' appointments. Feeling reassured after using the Internet for health purposes was twice as common as experiencing anxieties. When choosing a new doctor, more than a third of the sample rated the provision of e-health services as important. The users of Internet health services differ from the general population when it comes to health and demographic variables. The most common way to use the Internet in health matters is to read information, second comes using the net to decide whether to see a doctor and to prepare for and follow up on doctors' appointments. Hence, health-related use of the Internet does affect patients' use of other health services, but it would appear to supplement rather than to replace other health services.
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Internet and short message service are emerging tools for chronic disease management in adolescents, but few data exist on the barriers to and benefits of internet-based asthma self-management. Our objective was to reveal the barriers and benefits perceived by adolescents with well-controlled and poorly controlled asthma to current and internet-based asthma management. Ninety-seven adolescents with mild-to-moderate persistent asthma monitored their asthma control on a designated Web site. After 4 weeks, 35 adolescents participated in eight focus groups. Participants were stratified in terms of age, gender, and asthma control level. We used qualitative and quantitative methods to analyze the written focus group transcripts. Limited self-efficacy to control asthma was a significant barrier to current asthma management in adolescents with poor asthma control (65%) compared to adolescents with good asthma control (17%; p < 0.01). The former group revealed the following several benefits from internet-based asthma self-management: feasible electronic monitoring; easily accessible information; e-mail communication; and use of an electronic action plan. Personal benefits included the ability to react to change and to optimize asthma control. Patients with poor asthma control were able and ready to incorporate internet-based asthma self-management for a long period of time (65%), whereas patients with good control were not (11%; p < 0.01). Our findings reveal a need for the support of self-management in adolescents with poorly controlled asthma that can be met by the application of novel information and communication technologies. Internet-based self-management should therefore target adolescents with poor asthma control.
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A survey questionnaire was designed and implemented across three different communities to determine the current utilisation, importance, trust and future preference for the internet as a source of health information in three different socioeconomic groups. The following were the key results. Fewer respondents in the low socioeconomic group accessed online health information than the mid-high socioeconomic or university samples. The internet was a much more important source of health information for the university sample. The use of online health information and the importance ascribed to the internet as a source of health information was related to home internet access and the frequency of internet use in all three populations. Most respondents do not bring online health information to their doctor (>70% of those who access online health information). Age alone did not relate to the current use of the internet as a source of health information. Most respondents in all populations did not trust the internet. In all populations the internet was a more preferred source of health information than its current use would suggest, especially among those with home internet access and frequent users of the internet.
Over the past decade, there has been considerable interest in the transmission of health information made available though the Internet with increasing confidence being placed in the potential power of the Internet to transform communication, clinical practice and relationships with patients. Subsequent to the failure of a primary-care-based initiative designed to provide free assistance and access to health information via the Internet, a survey was conducted. Findings from this survey suggested that facilitating access to e-information is necessary, but not in itself sufficient, to encourage current non-users to start exploring the Internet. The qualitative study reported here was aimed at exploring the way in which people use and perceive the utility of Internet information for managing health and illness and engaging with the health service system. Data was gathered from two sources. Interviews and observations of a sample who had used a free primary-care-based Internet service (n = 5) and interviews with a sample drawn from a survey of patient attitudes to using the Internet for health information (n = 12). The less-considered aspects of access and the use of e-information for health matters related to the varied existing relationships respondents had to computers, health information and health professionals. One of the main reasons why some respondents do not use the Internet to access health information is related to a lack of perceived utility and pertinence of such information for managing their healthcare. The optimal and equitable use of the Internet as a means of complimenting health-service utilisation will not emerge merely from increasing access to e-information. The potential for narrowing or increasing inequality between the information rich and poor needs to be viewed in a broader psychosocial context. The latter includes the nature of existing relationships which people have with the health service and the value that people place on their own capacity to make use of information in managing their healthcare.
This study examines cancer patients' and companions' uses and gratifications of blogs and the relationship between different types of blogging activities and gratification outcomes. In an online survey of 113 respondents, cancer patients were found to be more likely than their companions to host their own blogs. Four areas emerged as gratifications of blog use: prevention and care, problem-solving, emotion management, and information-sharing. Cancer patients and companions both found blogging activity to be most helpful for emotion management and information-sharing. Further, cancer patients were more gratified than their companions in the areas of emotion management and problem-solving. Regression analyses indicate that perceived credibility of blogs, posting comments on others' blogs, and hosting one's own blog significantly increased the explanatory power of the regression models for each gratification outcome.
To examine cancer patients' and carers' use of, and attitudes to, the Internet as an information source compared with other media. The study was carried out in two phases: in phase I, interviews were used to construct a suitable instrument. In phase II, interviews were completed with 800 recently diagnosed patients and 200 carers. Relatively few patients (4.8%), but a high proportion of carers (48%), accessed the Internet directly for cancer information. However, around half of the patients used Internet information provided by someone else, generally a family member. The use of Internet information was uniformly low among ethnic minorities. Those who accessed Internet information reported high levels of satisfaction and generally rated it higher than booklets or leaflets. When asked who they would like to provide Internet information, overwhelmingly patients wanted the hospital doctor to do so. When this was done, there was very high compliance. Carers were much more proactive information seekers than patients. The Internet is an effective means of information provision in those who use it. Facilitated Internet access and directed use by health professionals would be effective ways of broadening access to this medium.
To understand how Californians use and rate various health information sources, including the Internet. Computer-assisted telephone interviews through which surveys were conducted in English or Spanish. A household sample generated by random digit dialing. The sample included 1007 adults (18+), 407 (40%) of whom had access to the Internet. Past health information sources used, their usefulness and ease of use; future health information sources, which are trusted and distrusted; and concerns about integrating the Internet into future health information seeking and health care behaviors. Physicians and health care providers are more trusted for information than any other source, including the Internet. Among those with Internet access, a minority use it to obtain health information, and a minority is "very likely" to use e-mail to communicate with medical professionals or their own doctors and nurses, to refill prescriptions, or to make doctor appointments. Also, most of those with Internet access are "unlikely" to make their medical records available via the Internet, even if securely protected. The public, including frequent Internet users, has major concerns about the confidentiality of electronic medical records. Legislation may not assuage these fears and a long-term, open and collaborative process involving consumers and organizations from all the health care sectors may be needed for full public assurance.
Increasingly, consumers engage in health information seeking via the Internet. Taking a communication perspective, this review argues why public health professionals should be concerned about the topic, considers potential benefits, synthesizes quality concerns, identifies criteria for evaluating online health information and critiques the literature. More than 70 000 websites disseminate health information; in excess of 50 million people seek health information online, with likely consequences for the health care system. The Internet offers widespread access to health information, and the advantages of interactivity, information tailoring and anonymity. However, access is inequitable and use is hindered further by navigational challenges due to numerous design features (e.g. disorganization, technical language and lack of permanence). Increasingly, critics question the quality of online health information; limited research indicates that much is inaccurate. Meager information-evaluation skills add to consumers' vulnerability, and reinforce the need for quality standards and widespread criteria for evaluating health information. Extant literature can be characterized as speculative, comprised of basic 'how to' presentations, with little empirical research. Future research needs to address the Internet as part of the larger health communication system and take advantage of incorporating extant communication concepts. Not only should research focus on the 'net-gap' and information quality, it also should address the inherently communicative and transactional quality of Internet use. Both interpersonal and mass communication concepts open avenues for investigation and understanding the influence of the Internet on health beliefs and behaviors, health care, medical outcomes, and the health care system.