=Paper=
{{Paper
|id=Vol-1574/paper10
|storemode=property
|title=Contemporary eHealth Literacy Research
- An Overview with Focus on Germany
|pdfUrl=https://ceur-ws.org/Vol-1574/paper10.pdf
|volume=Vol-1574
|authors=Anna-Lena Pohl,Lena Griebel,Roland Trill
|dblpUrl=https://dblp.org/rec/conf/pahi/PohlGT15
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==Contemporary eHealth Literacy Research
- An Overview with Focus on Germany==
https://ceur-ws.org/Vol-1574/paper10.pdf
Contemporary eHealth Literacy Research
– An Overview with Focus on Germany
Anna-Lena Pohl1, Lena Griebel2, Roland Trill1
1 Institute for eHealth and Management in Healthcare,
Flensburg University of Applied Sciences, Germany
2 Chair of Medical Informatics,
Friedrich-Alexander University Erlangen-Nürnberg, Germany
Abstract. eHealth Literacy is a crucial topic in regarding the acceptance of
consumers towards eHealth services. There are several measurement methods,
nevertheless they all lack interactive aspects of trending technologies such as
mobile health apps or self-tracking services. Furthermore none of them
acknowledges cultural and social backgrounds. Although the topic is of great
importance it seems to be underrepresented in Germany.
1 Introduction
In today’s society electronic health services (eHealth) play an increasing role and
generally in the western societies there is a great willingness to use them [1-3].
EHealth services are able to offer a variety of advantages to the user [4-6]. Eland-de
Kok et al. found in a systematic review that eHealth interventions for chronically ill
persons can lead to positive effects on primary health outcomes [7]. Santana and
colleagues measured that almost 27% of European citizens who had searched for
health information online also have made active suggestions on diagnosis or treatment
to their physician and thus took a more active role in medical decision making [6]. In
a meta-analysis of randomized controlled trials on the effects of consumer health
information technologies for diabetes patients, Or and Tao found that the usage of
eHealth technologies reveal positive effects on clinical parameters such as blood
pressure or cholesterol levels [8].
Nevertheless the literature shows that eHealth services often are not accepted by
the intended users (e.g. Google Health) [9] at all or that the interest is flagging over
time [10]. If health services on the Internet are not used properly it might lead to
emotional harm of the user or, in one reported case to the death of a patient [11].
Numerous factors contributing to an appropriate use of eHealth services include
different facets: There might be different contexts of use (e.g. support from other
persons) [12], different personalities (e.g. high intrinsic motivation, anxiety) [12, 13],
and characteristics of the intended users (e.g. gender, age) [12] or diverse
competencies of the users to use eHealth services [14, 15].
In addition, it is vital to know potential end-users’ obstacles to use such services.
Due to the technological development and the increasing importance of modern
Copyright © 2016 by the paper's authors. Copying permitted for private and academic purposes.
In: G. Cumming, T. French, H. Gilstad, M.G. Jaatun, E.A A. Jaatun (eds.):
Proceedings of the 3rd European Workshop on Practical Aspects of Health Informatics
(PAHI 2015), Elgin, Scotland, UK, 27-OCT-2015, published at http://ceur-ws.org
92
information technology eHealth literacy research is the key part in health literacy
research.
Due to ubiquitous accessible health information and interactive functions eHealth
services are expected to help overcome unequal access to health care and thus help
decrease social inequalities in health care. Nevertheless, we face the risk that
individuals will not use them in the most efficient way simply because they are not
able to. Thus, it is essential to understand what skills are needed to use eHealth
services efficiently. Nevertheless, the contemporary understanding of eHealth literacy
seems to lack several important aspects regarding further eHealth barriers such as
other personality factors like anxiety or trust. Although in other nations like the
United States or Scandinavian countries there is a vivid eHealth literacy research it
appears that Germany is mostly lacking those research efforts. The objective of this
article therefore is twofold: First it shows how the contemporary research regards
eHealth Literacy and what aspects might be missing. A new approach is presented to
integrate technology acceptance models into the eHealth literacy concept. Second it
focuses especially on Germany and provides insights into German eHealth literacy
research by presenting an overview on the research state and introducing several
research projects.
2 Methods
To work on the first focus of this paper – the contemporary eHealth literacy research
and the promotion of a possible model extension – we conducted a literature research
in MEDLINE searching for terms like “technology acceptance AND ehealth”,
“eHealth” AND “literacy” AND factors OR “barriers”. Furthermore a workshop was
conducted during the 2014 MIE in Madrid to discuss possible eHealth barriers with
experts.
To answer the second question regarding the state of eHealth literacy research in
Germany Internet researches were conducted; also article alerts from MEDLINE
providing regular updates on articles with the topic of eHealth literacy were used.
3 Results
3.1 eHealth Literacy research – state of the art and model extension
Health Literacy is a term that was first introduced over 30 years ago [16]. Ratzan and
Parker created the mostly used definition; according to them Health Literacy is “the
degree to which individuals have the capacity to obtain, process, and understand basic
health information and services needed to make appropriate health decisions” [17].
Since the 1970s the concept of Health Literacy has been used widely in research
and can be measured by a large variety of tools (e.g. TOFHLA, HALS, REALM,
MART, FHLM, ELF…) [18]. One problem with these tools is that although they offer
93
gold-standard for the measurement of Health Literacy (like TOFHLA and REALM),
it is not possible to apply them for computer-based use [19].
Due to this background an extension of the Health Literacy concept to include e-
health related competencies was performed. Cameron Norman and Harvey Skinner
were pioneering in the concept of eHealth Literacy: They defined it as “the ability to
seek, find, understand, appraise health information from electronic sources and apply
the gained knowledge to addressing or solving a health problem” [20].
Whereas Health Literacy measures competencies in the context of paper-based
resources in the healthcare environment, eHealth Literacy is much more complex:
Persons who are intended to use electronic sources for health purposes need a variety
of skills – basic literacy (reading and writing of texts) is as well necessary as knowing
how to use computers and understand and evaluate science and media [20]. So
Norman and Skinner defined eHealth Literacy not just as a combination out of the
capability to use computers and Health Literacy but as a meta-literacy out of different
facets of literacy.
Thus eHealth Literacy consists of six domain-specific facets:
- Health literacy: Health knowledge comprehension
- Computer literacy: Skills to use hard- and software to solve problems
- Science literacy: Understanding science processes and outcomes
These three competencies are the context-specific components of the e-health
literacy model as they describe abilities needed to use electronic sources for health
purposes. As one can see, health literacy is a part of it. Those components are
supplemented by three analytic components describing more general competencies.
Here constructs like traditional literacy are included:
- Traditional literacy: Reading, writing, and numeracy, which is important as
electronic sources of health information are still text dominant.
- Media literacy: Thinking critically about media content
- Information literacy: Seeking and understanding information to make
decisions
eHealth Literacy takes up the idea of health literacy but makes an addition to it by
including more competencies. All the competencies are grouped in the so-called Lily
model which is shown in Fig. 1. Important for the understanding of eHealth Literacy
is as well that the competencies are not stable but might increase over the time [20]
thus enabling the training of said literacy [21].
The aim of measuring eHealth Literacy is to prevent the creation of tools to
promote health and deliver health care service that are inaccessible to the users they
are intended for. By measuring an individual’s eHealth Literacy it is possible to get an
overview of his or her competencies. Furthermore the functionality of e-health
application software can be evaluated by measuring the changing of competencies
over the time this software is used.
Until now eHEALS (eHealth Literacy Scale), [22] is the widest used measurement
tool for assessing e-health literacy of individuals [19], consisting of 8-10 items.
Norman and Skinner developed it in English using a sample of Canadian adolescents
[14, 22]. Koo et al., van der Vaart et al., and Mitsutake et al translated eHEALS into
Chinese, Dutch, respectively Japanese [23-25]. Soellner et al. provided a German
translation of the eHEALS [26].
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Fig. 1: eHealth Literacy: The Lily Model
Cameron Norman who, together with Harvey Skinner, created the Lily Model in
2006 wrote five years later that he sees some problems with it, for example that it
does not fit to the Web 2.0 solutions [27]. Others stated that eHealth literacy was
heavily depending on social structures [24] or the individual motivation to use a
system [13] which is not included in the original Lily Model. Thus the original Lily
Model is lacking several aspects of eHealth usage such as the contexts of use, further
user characteristics like anxiety or motivation, and different personalities of the
intended users including age, gender and socioeconomic status.
In her article “Toward a Comprehensive Model of eHealth Literacy” for the PAHI
workshop 2014 [28]Heidi Gilstad describes how she included other literacies like
cultural, contextual, and communicative competencies into the Lily Model.
Furthermore she emphasized that it was important to distinguish between
propositional (knowledge generated from theoretical sources such as books or
research articles) and procedural knowledge (gained from practical experiences).
This is a very interesting approach to enrich the Lily Model. In our research we
regarded numerous models dealing with technology acceptance factors besides the
eHealth literacy concept.
Well-known and widely used is the Technology Acceptance Model (TAM) which
was developed in the 1980’s in the light of the concern that workers were not using
IT. Its originators reasoned that the key to increasing use was to first increase the
acceptance towards IT, which could be assessed by asking individuals about their
future intentions to use the IT. Knowing the factors that shaped one’s intention would
allow organizations to manipulate those factors in order to promote acceptance and
thus increase IT use. Early TAM research discovered that only two factors (perceived
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usefulness and perceived ease of use) were needed to explain, predict, and
presumably control acceptance [29] (Fig. 2).
Fig. 2: Technology Acceptance Model (TAM)
Until today the original TAM model has gone through a number of changes
(TAM2, TAM3, and UTAUT). An impressive effort to unify the IT acceptance
resulted in the Unified Theory of Acceptance and Use of Technology (UTAUT), a
[12] (Fig. 3).
Fig. 3: Unified Theory of Acceptance and Use of Technology (UTAUT)
Nevertheless neither the eHealth Literacy model nor the technology acceptance
models do include all relevant factors leading to the acceptance of eHealth services.
Regarding the research on eHealth usage among consumers it becomes clear that
eHealth literacy is only one amongst other factors influencing the use behavior.
During a workshop focusing on consumer-oriented eHealth barriers conducted at the
Medical Informatics Europe (MIE) conference 2015 in Madrid, Spain with
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interdisciplinary experts (e.g. medical professionals, technicians, and social scientists)
this finding was supported: eHealth Literacy is one important but by far not the only
factor that needs to be taken into account when regarding and predicting the usage
behavior towards eHealth solutions among consumers. Literacy is merely one of
several cognitive barriers amongst barriers regarding the motivation of the user, the
accessibility to Internet technologies, trust issues, environmental and organizational
barriers and technical barriers such as the usability of the respective service [30].
This finding is supported by a literature research conducted in 2013 using Medline.
The review showed that eHealth service acceptance was influenced by many factors
including e.g. trust, anxiety of the user, or UTAUT factors such as the perceived
usefulness of a service. EHealth Literacy was found to be directly connected with the
intention to use eHealth services [31]. In a subsequently developed research model
eHealth Literacy was thus a central explanation factor of the intention to use eHealth
services. The research model which aims to provide an overview on eHealth
acceptance factors is shown in Fig. 4.
For example if a person intents to use an eHealth service his or her acceptance
directly depends on factors like the social influence (do other persons who are
important for me think that I should use the system?), facilitating conditions (are there
conditions that help me using the system?), performance expectancy (what benefit do
I expect by using the system?), and effort expectancy (what efforts do I expect by
using the system?). Those factors were derived from the UTAUT model. Besides
those factors anxiety and trust were found to directly influence the intention to use
eHealth services by analyzing the literature [32, 33]. Direct influence was also found
for the user’s condition (the degree of well-being) [32, 34], the health specific
knowledge (the users’ perception of how much knowledge they have regarding the
own health condition) [35, 36], the Internet dependency (degree of habit or
compulsion to use the Internet for information or self-management) [20], and the
satisfaction with medical care (users’ beliefs concerning the medical services received
or experienced) [32]. Attitude towards using describes the expected feeling about
using an eHealth service and was as well found to have a direct influence on the usage
intention [32] as the computer self-efficacy (individual judgement of the own
capability to use computers or eHealth services) [37].
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Fig. 4: eHealth Literacy and Technology Acceptance - a research model
3.2 eHealth Literacy Measurement – State of the Art
By measuring an individual’s eHealth Literacy it is possible to get an overview of his
or her competencies that are needed for using eHealth services and applications.
Furthermore the functionality of e-health application software can be evaluated by
measuring the changing of competencies over the time this software is used. Until
now eHEALS (eHealth Literacy Scale), [22] is the widest used measurement tool for
assessing e-health literacy of individuals [19], consisting of 8-10 items. Norman and
Skinner developed it in English using a sample of Canadian adolescents [14, 22]. Koo
et al., van der Vaart et al., and Mitsutake et al translated eHEALS into Chinese,
Dutch, respectively Japanese [23-25]. Soellner et al. provided a German translation of
the eHEALS [26].
After it has been developed by Norman and Skinner in 2006 the eHEALS has been
used several times in the healthcare environment. Brown and Dickson measured
healthcare student’s e-health literacy skills [38].
Also Hove et al., Ghaddar et al., and Paek and Hove used eHEALS to measure
eHealth Literacy of adolescents [39-41]. Neter et al. reduced the number of items to
only six to measure eHealth Literacy in the average Israeli adult population [14].
Another broad approach of eHEALS to measure eHealth Literacy of a larger group of
98
people is the work of Mitsutake et al. who measured an association of approximately
3000 Japanese adults with their knowledge about colorectal cancer [42]. Furthermore
Ossebaard et al. measured the eHealth related literacy for patients with chronic
diseases. This study is one of the few found papers that used eHEALS outside of the
North American area (Netherlands) [43]. Also eHealth Literacy of low-income
parents with chronically ill children or with children that are in a pediatric palliative
care program, HIV patients and older adults has been measured using eHEALS [44-
48].
Tennant and Stellefson found that baby boomers and older persons who used
Health 2.0 technologies had higher levels of eHealth Literacy than persons who did
not. For their study they as well used the eHEALS [49].
An alternative measurement of eHealth literacy was proposed by Chan et al. who
developed a taxonomy to characterize the complexity of several eHealth tasks and
therefore draw conclusions on the individual users’ competencies to perform those
tasks [50]. This approach nevertheless is very complex and time consuming as it
implies the direct observation of individual persons during their usage of an eHealth
system. In our approach including three spatially separated user sites with a large
number of users it was not practicable to perform such an observational study. In
2014, Chew published a conference paper dealing with the development of a new
scale to measure eHealth literacy [51].
In 2013 Jones developed the Patient eHealth Readiness Scale (PERQ) which
includes items from the eHEALS as well as contextual factors like Internet use,
support from other persons and demographics such as age and gender [52]. This
approach has been used two times in published papers [53, 54]. Philipp Abbott-
Garner from Plymouth University currently uses it in his PhD work [55].
The work of Chew has not been tested in the practice yet thus does not deliver
starting points for its usage. To adequately address the finding that the eHealth
Literacy concept does not include all relevant factors explaining the use of interactive
eHealth solutions a broader range of factors should be included in a measurement tool
to adequately assess eHealth Literacy.
There has been done some international research in measuring eHealth Literacy but
still all tools lack the acknowledgement of different personal backgrounds that
influence deeply the measured competencies: social and cultural factors need to be
taken into account when discussing the level of eHealth Literacy.
3.3 eHealth Literacy in Germany
In Germany research on eHealth Literacy is practically still in its infancy. A group of
researchers around Prof. Dr. Soellner at the University of Hildesheim translated the
self-reported measurement tool eHeals in German [26]. It was presented for the first
time at a conference in France in 2013.
The University of Bielefeld organized a Health Literacy conference in 2014 where
eHealth Literacy as an independent field of research unfortunately was just a side
note. Research on Health Literacy of children and adolescents is done by Ullrich
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Bauer who situated at the Faculty of Education at the University of Bielefeld. He
concentrates on health literacy and has no focus on eHealth Literacy.
Apart from these approaches the authors of this paper are working on the subject of
eHealth Literacy. At the chair of Medical Informatics at the University of Erlangen-
Nürnberg a project developed the eHealth Monitor. It provides a platform that
generates a Personal eHealth Knowledge Space (PeKS) as an aggregation of several
knowledge sources (e.g., ECG reports or information pages from the Internet)
relevant for the provision of individualized personal eHealth services. This is realised
by integrating service-oriented architecture, knowledge engineering, multiagent
systems, and wearable/portable devices technologies.
The eHealthMonitor was evaluated in the light of acceptance factors including
eHealth Literacy measurement of medical laypersons and medical professionals in
three study sites (Germany, Poland, and Greece) using the eHEALS. It was found that
the self-assessed eHealth Literacy of all user groups was medium to high whereas the
biggest barriers towards the use of eHealthMonitor have been seen in data privacy
aspects and usability issues [56].
At the Institute for eHealth and Management in Healthcare (IEMG) at Flensburg
University of Applied Sciences two project applications dealing with eHealth Literacy
of specific user groups are currently prepared. The research field is also part of the
research done in the eHealth for Regions Network, which is coordinated at the IEMG
in Flensburg.
Another German initiative in the field of eHealth Literacy is the national ePatient
survey [23]. The users of online eHealth information websites are questioned
concerning their user habits and the effects on their health and medical therapies and
on their health behavior. The survey is conducted online and carried out annually
since 2010. The outcomes are used to analyse the user habits of patients, their families
and other groups depending on their diseases, risk factors, therapies and care
pathways. It monitors the behaviour of individuals seeking for health information in
the internet in the German speaking area. The survey asks the users about their usage
habits and the effects of the web usage on their health behaviour, diseases and
therapy. Studies have shown that the usage of internet for seeking health information
has a significant impact on knowledge, attitude and health behaviour and internet
based health and care services can help to optimize medical therapy. Until now the
survey has not yet been scientifically evaluated. According to the findings some
hypothesis can be formulated regarding future research on eHealth literacy,
acceptance of eHealth services and patient empowerment.
4 Conclusion
To conclude, one can say that internationally there is a vivid research on eHealth
Literacy and there are possibilities to measure it. Nevertheless there are four points
that are open for future research:
1. How is eHealth Literacy connected with other acceptance factors? How
important is it that consumers have a high eHealth Literacy from the
beginning when it is possible that their competencies increase over time?
100
2. How can eHealth Literacy be measured and interpreted taken into account
social and cultural backgrounds of people?
3. Does the eHealth Literacy construct needs a rebuilding in the light of
trending interactive health technology solutions such as mobile health? There
are services that use the Internet without the user having to handle browser
etc. (e.g. smart watches).
4. What are the reasons that eHealth Literacy research is still so weak in
Germany and how can it be fostered?
In the future research to answer all those questions is needed. Besides all possible
further acceptance barriers that might be at least as important as eHealth Literacy, the
ability to use eHealth services properly will always be a key to the success of all kind
of electronic health services.
Due to this it is essential that Germany starts to take the user into account and
focuses on his wishes and expectations. For this a large study is needed providing an
overview on German laypersons competencies concerning eHealth services including
mobile Health services and interactive health solutions.
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