Approaches to Promoting Patients’ and Citizens’ eHealth Literacy

Sophia Grummt

and Brita Sedlmayr

Institute for Medical Informatics and Biometry, Carl Gustav Carus Faculty of Medicine,

TUD Dresden University of Technology, Dresden, Germany

Keywords: eHealth Literacy, Digital Competence, Online Health Information, Patient Empowerment.

Abstract: eHealth Literacy (eHL) is of crucial importance in the increasingly digital landscape of healthcare. eHL is

defined as the intersection of general health literacy and digital competencies, expanded to include new facets

such as data literacy and privacy awareness. Current studies indicate that a significant portion of the German

population has low eHL, leading to difficulties in evaluating online health information and challenges in

accessing and utilizing digital health services, which correlate with lower health status. Various measures for

enhancing citizens’ eHL are proposed, including education, public awareness campaigns, and ensuring equal

access to digital health services. Specific initiatives from the "MiHUBx" project are highlighted, such as

developing a knowledge platform for patients and organizing information events focused on digital health

topics. Fostering eHL is a societal responsibility that requires an inclusive and coordinated approach. Strategic

efforts to this end are vital to ensure that all citizens can benefit from advancements in digital healthcare.

1 INTRODUCTION

In an increasingly digitalized world, access to

healthcare information and services has changed

tremendously. From online booking of medical

appointments to the use of health apps and

telemedicine, the digitalization of healthcare is

rapidly progressing. These developments offer

immense opportunities for improving healthcare,

promoting a health-conscious lifestyle and thus

increasing quality of life. However, the successful use

of digital health solutions requires citizens to have the

necessary digital health literacy (Dratva et al., 2024),

also called eHealth Literacy (eHL). That means

people have to possess a multifaceted set of skills that

is fundamentally composed of general health literacy

and digital competencies.

2 E-HEALTH LITERACY

2.1 Defining Health Literacy

Relying on the European Health Literacy study (HLS-

EU), Health Literacy (HL) can be defined as

https://orcid.org/0000-0001-5094-1456

https://orcid.org/0000-0001-6159-7822

“people’s knowledge, motivation and competences to

access, understand, appraise, and apply health

information in order to make judgments and take

decisions in everyday life concerning healthcare,

disease prevention and health promotion to maintain

or improve quality of life during the life course”

(Sørensen et al., 2012, p. 3). This definition takes into

account not only the participation of individuals in

healthcare but also their prevention and health

promotion activities and considers HL to be a

multidimensional concept (Pelikan et al., 2022;

Sørensen et al., 2012).

2.2 Understanding Digital

Competencies

There are various concepts that address the topic of

digital competencies. One of the best known and most

widely used is the European Reference Framework

for Digital Competences (the so-called DigComp).

According to its definition, “digital competence

involves the confident, critical and responsible use of,

and engagement with, digital technologies for

learning, at work, and for participation in society. It

includes information and data literacy,

758

Grummt, S. and Sedlmayr, B.

Approaches to Promoting Patients’ and Citizens’ eHealth Literacy.

DOI: 10.5220/0013266500003911

Paper published under CC license (CC BY-NC-ND 4.0)

In Proceedings of the 18th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2025) - Volume 2: HEALTHINF, pages 758-765

ISBN: 978-989-758-731-3; ISSN: 2184-4305

communication and collaboration, media literacy,

digital content creation (including programming),

safety (including digital well-being and competences

related to cybersecurity), intellectual property related

questions, problem solving and critical thinking”

(Directorate-General for Education, 2019, p. 10).

Sorko and Irsa (2019) define the term digital

competence to include all the skills and abilities

necessary to successfully meet the new demands

brought about by digitalization. They refer less to an

independent area of competence, but rather to a

content-oriented classification. Accordingly, the term

encompasses specific digital technical,

methodological, social and personal competencies

(Sorko & Irsa, 2019). This approach emphasizes the

practical and contextual orientation in the application

of the concept of competence.

2.3 The eHealth Literacy (eHL)

Concept

eHL is a multidimensional concept that incorporates

the two areas of competence described above. Put

simply, eHL refers to the ability to find, understand,

evaluate and use digital health-related information

(Norman & Skinner, 2006).

Figure 1: Lily model (adapted from Norman and Skinner,

2006) expanded with new facets according to Dratva

(2024). Bold font: original Lily model competencies,

regular font: conceptually additional digital skills; grey

filling: analytic literacy skills, blue filling: context-specific

literacy skills.

According to Norman and Skinner's Lily model

(Norman & Skinner, 2006), as shown in Figure 1,

eHL includes six core components that can be divided

into analytic literacy skills, which are generically

applicable to several sources and situations, and

context-specific literacy skills, focused on specific

issues, problem types, and contexts.

Since digital information is no longer just

consumed but also produced, provided, and shared

among individuals, more recent concepts also take

this aspect into account (Dratva et al., 2024; Nutbeam

& Muscat, 2021). They recognize additional

important digital skills as part of eHL and have

consequently expanded the original Lily model to

include these facets. According to them, eHL also

describes, for instance, the ability to decide what

information you want to share with third parties and

how you want to handle your own health data that is

collected in an app (data literacy and data protection

and information privacy literacy).

The systematic imparting of all the skills

mentioned above is essential to enable patients and

citizens to meet the new requirements of the digital

age and to exploit the full potential for promoting and

maintaining their own health in the context of the

digitalization of the healthcare system.

2.4 Current State of eHL in Germany

Research reveals that eHL is often low at an

international level and that large parts of the

population have difficulties in dealing with digital

health information (Schaeffer, 2021). Studies also

show that a high level of eHL goes hand in hand with

increased use of the internet and digital information

services (Schaeffer, 2021). As one of the first

comprehensive studies on eHL in Germany, the

second Health Literacy Survey Germany (HLS-GER

2), which is part of the “Health Literacy Population

Survey” (HLS19) of the “WHO Action Network on

Measuring Population and Organizational Health

Literacy” (M-POHL), examined this facet alongside

general HL (Schaeffer, Berens, et al., 2021; The

HLS19 Consortium of the WHO Action Network M-

POHL, 2021). The survey was conducted using

paper-assisted personal interviews with a nationally

representative sample of over 2,000 participants. The

results indicate that a very large proportion of the

German citizens - over three quarters (75.8%) - has a

low level of eHL (Schaeffer, Gille, et al., 2021). The

eHL of the population in Germany is therefore

significantly lower than general HL (58.8% have only

low health literacy) (Schaeffer, Berens, et al., 2021).

The most difficult aspect for respondents is, by far,

Approaches to Promoting Patients’ and Citizens’ eHealth Literacy

759

assessing the trustworthiness and neutrality of digital

health information. The opaque coexistence of

serious and dubious information in online

information channels seems to make handling digital

information extremely challenging nowadays (Dratva

et al., 2024). This is not specific to Germany. The

other 13 countries that surveyed eHL in the HLS19

reached the same conclusion (The HLS19

Consortium of the WHO Action Network M-POHL,

2021).

In another empirical study conducted as part of a

panel survey with a population-representative sample

of 8,500 adults living in Germany, 52.4% of the

participants showed limited eHL (Zeeb et al., 2022).

It should be noted that all participants in this study

were recruited and surveyed online, so it is not

representative in terms of internet use. Although both

studies used the Digital Health Literacy Instrument

DHLI (van der Vaart & Drossaert, 2017) to measure

eHealth literacy, the version of the questionnaire used

in this case contained twice as many items (21 items)

as the HLS-GER 2 (ten items). The study authors

attribute the difference from the results of the HLS-

GER 2 study to the different participant groups and

evaluation strategies, pointing to the limited

comparability between the two studies. However,

both studies concluded that users have great difficulty

in evaluating the quality of the online information

they encounter. Additionally, Zeeb et al. (2022) found

that a poorer health status was statistically

significantly associated with lower eHL.

2.5 The Importance of Enhancing eHL

The above-mentioned survey results underline that

there is an urgent need for action to strengthen eHL

in the general population. The consequences of a lack

of eHL can be far-reaching: inadequate use of digital

health services, misinformation and even adverse

health outcomes are possible consequences. Without

sufficient eHL, citizens cannot take full advantage of

digital health services and are more vulnerable to

health information of dubious quality. Improving

eHL is of central importance for several reasons:

1. Improved access to health information and

services and participation in health decisions: High

eHL enables citizens to find and evaluate quality-

assured health information on the internet, actively

participate in medical decision-making processes,

and better understand their own health decisions

(German Federal Ministry of Health, 2022). This

could increase self-efficacy and decision-making

ability in health matters (Farley, 2020).

2. Reduction of health inequalities: eHL can help

reduce health inequalities by enabling all population

groups to access digital health information and

services (Dratva et al., 2024). Digitally competent

citizens can better utilize digital health services,

which can contribute to improved healthcare,

particularly in rural areas and underserved

communities.

3. Promotion of a healthy lifestyle, prevention,

and early detection: Competent use of health apps and

wearables allows citizens to actively monitor and

promote their health (German Federal Ministry of

Health, 2022), contributing to disease prevention and

early detection, and potentially leading to a long-term

reduction in chronic diseases.

4. Increased efficiency in healthcare: Citizens

with high eHL could relieve the healthcare system

and contribute to cost efficiency by utilizing digital

health services.

5. Promotion of medical research: According to a

population-representative survey, more than 86

percent of Germans would agree to the use of health

data for publicly funded medical research without

individual consent (Richter et al., 2024), provided

that data usage and access are legally regulated and

adequately controlled. However, more than two thirds

of respondents wanted a larger supply of information

on medical research with health data in order to make

an informed decision about whether to participate in

data donation. An opt-out regulation (the omission of

case-by-case consents) thus requires expanded

information offerings to strengthen health data

literacy and trust in medical research (Richter et al.,

2024).

2.6 Possible Measures to Strengthen

eHL

To generally strengthen eHL in the population,

targeted measures are necessary. These should be

implemented at various levels. The following

exemplary list provides an initial overview of

promising starting points and is intended serve as a

source of inspiration. How the recommended

measures can be implemented in practice would have

to be worked out in detail with the relevant social,

political and medical players.

1. Education and training: Development and

implementation of educational programs that train

citizens in the use of digital health services and in

dealing with digital health information. Media and

health literacy should already be systematically

linked and specifically promoted in the school setting

(Bittlingmayer et al., 2020).

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2. Enablement through healthcare providers:

Healthcare providers should be actively involved in

teaching digital health skills to their patients

(Konstantinidis et al., 2022). This can be done

through training, information events and the

provision of easy-to-understand digital resources.

3. Low-threshold offers: Develop, promote and

publicize low-threshold, easily accessible offers such

as free online courses, tutorials and mobile apps that

are specifically tailored to the needs of different target

groups (e.g. adapted to age, occupational group,

medical condition and/or skill level).

4. Public awareness: Implementation of

multimedia education campaigns to raise awareness

of the importance of eHL, promote the critical use of

health information on the internet and social media

and motivate citizens to upskill (German Federal

Ministry of Health, 2022).

5. Research and evaluation: Promoting research

on eHL, particularly on how people receive their

health information and how they prefer to be

informed or get access to information in the future,

and continuously evaluating measures to strengthen

eHL in order to assess and improve their effectiveness

(Dratva et al., 2024).

6. Access to digital health services: Ensuring that

all citizens have access to digital health services,

regardless of their social or economic status (Dratva

et al., 2024).

Taking the last point as an example for providing

some insights into how the measures could be

realistically implemented in practice, here are some

more detailed ideas how to support equal access to

digital health services:

Improving Infrastructure

 Ensure nationwide access to the internet by

expanding broadband and mobile network

infrastructure, particularly in rural and

economically disadvantaged regions.

 Provide free internet access, for example, by

offering complimentary Wi-Fi in public

facilities such as libraries, schools, and

hospitals.

Reducing Financial Barriers

 Offer subsidized digital devices through

programs that provide low-income households

with affordable or free tablets, smartphones, or

computers.

 Ensure that essential digital health services and

applications are free of charge or covered by

the healthcare system.

Promoting Education and Training

 Enhance eHL by integrating training on the use

of digital health services into programs offered

by adult education centers, employment

agencies, and social organizations.

 Provide individual support by establishing

contact points where citizens can receive

technical assistance and guidance, such as

through "eHealth hotlines" or on-site services

in community centers.

Ensuring User-Friendliness

 Develop accessible digital health solutions that

are user-friendly and inclusive, ensuring they

are easily usable for individuals with

disabilities or limited digital skills.

 Offer multilingual health services and

information to facilitate access for migrants

and refugees.

Establishing Political Frameworks

 Create a legal framework that enshrines the

right to access digital health services in the

Social Code.

These measures can help to ensure that all citizens

in Germany, regardless of their social or economic

background, have access to digital health services,

which is essential for systematically fostering eHL

across the population.

2.7 Initial Approaches to Strengthen

eHL in the German Population as

Part of the Project “MiHUBx”

The digital progress hub “Medical Informatics Hub in

Saxony” (MiHUBx), funded by the German Federal

Ministry of Education and Research, aims to make

healthcare data from routine care accessible for

research purposes and strengthen collaboration in

healthcare (MiHUBx, n.d.). To this end, the German

medical informatics initiative is establishing a digital

infrastructure with processes and tools that will

enable healthcare facilities to make routine data

available for research. To ensure the usability of this

digital infrastructure, measures are being devised and

implemented to promote the acceptance of the

project’s digital solutions developed and to enhance

digital competencies. This includes enabling patients

to gain a better understanding of digitality in

healthcare and thereby increasing overall acceptance

of digital applications in this context. To this end,

various measures have been implemented or initiated

to date, including the following:

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2.7.1 Digital Knowledge Platform for

Patients and Citizens

The aim of strengthening digital (health)

competencies in the population is to be achieved,

among other approaches, with the help of a

knowledge platform embedded in the MiHUBx

project website, which is currently being developed

(Grummt et al., 2024). The information webpages for

patients and citizens can be accessed at

https://mihubx.de/wissen-patienten/. Patients are

currently supported by the web subpages in

strengthening digital competencies by providing

them with information on topics such as health data,

digital medicine, and corresponding applications.

General information on digitalization in the

healthcare sector is presented in layman's terms in the

“Grundlagenwissen (Basic Knowledge)” section. In

the “Digitale Kompetenz (Digital Competence)”

section, users are informed about how they can assess

the quality of health information on the internet and

are provided with corresponding checklists and

guidance. The HLS19 and HLS-GER 2 studies have

shown that most people find it difficult to assess the

content of digital health information (Schaeffer,

Gille, et al., 2021; The HLS19 Consortium of the

WHO Action Network M-POHL, 2021), which is

why we want to support them in this important aspect.

Additionally, the "Gesundheitsportale (Health

Portals)" section offers a comprehensive compilation

of valid health information sources and websites with

information on topics such as digital health

applications, data protection and security. The

“Weiterbildungen (Education)” section refers to

numerous free educational offerings for target groups

such as patients and citizens with a focus on (digital)

health, data (literacy), and artificial intelligence.

Under “Podcasts”, our podcast recommendations

offer knowledge to listen to on current topics in

healthcare, digitalization in medicine and general

medical knowledge. A comprehensive “Glossar

(Glossary)” explains technical terms from the fields

of digital medicine, medical informatics, and

digitalization. The knowledge webpages for patients

provide a wide range of information and educational

resources on digital health, all in one digital location.

This is intended to increase acceptance of and

participation in the digital transformation of the

healthcare system. Incidentally, the next step will be

implementing knowledge pages tailored specifically

to the needs of physicians and medical staff.

2.7.2 (Online) Events for Patients and

Citizens

To strengthen the eHL of patients and their relatives,

(online) events are designed and conducted that

provide an overview and education on digital health

topics and offer opportunities for skill development.

For example, MiHUBx took part in the 21st Dresden

Science Night in June 2024, a format where scientific

topics are introduced to the general public in a

playful, accessible manner. Visitors to our stand were

able to get an all-round view of the topics “digital

medicine”, “artificial intelligence”, “use of patient

data for medical research and broad consent” and

“work of a data integration centre” using interactive

offers and leave their opinions on an opinion board.

The participants experienced a high level of openness

and interest from visitors leading to insightful

discussions.

In November 2024, we hosted an event on

digitalization and data usage in healthcare for patients

and interested parties in collaboration with the

Complex Regional Pain Syndrome (CRPS) Patient

Network. In meetings with board members of the

network, we discussed which digital health topics are

particularly relevant and interesting for CRPS

patients, and developed a corresponding agenda. In an

interactive online format, with a mix of lectures,

discussions, and Q&A sessions, topics such as the

electronic patient record (basics and access

management), handling health data, as well as digital

health applications and support options for CRPS

have been addressed. The participants asked many

questions and reported on their previous experiences

in dealing with personal health data, which led to

several interesting discussions. Unfortunately, we

had to end the event after more than two and a half

hours (two hours were originally planned), but based

on the questions and the need for discussion, it could

certainly have lasted even longer. Our aim is to

continue organizing similar themed events for various

patient organizations and networks.

2.7.3 Informational Flyers in Plain

Language

In an analogue format, we provide patients and

citizens with information about health data and its

secondary use for medical research through

informational flyers in plain language. These flyers

are designed to help individuals understand complex

topics, such as data donation, privacy protections, and

the benefits of health data usage for medical research,

in a straightforward and accessible way. By

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addressing common questions and concerns, the

flyers aim to build trust and promote transparency

regarding the use of health data in research.

To further support digital health literacy,

additional flyers are being planned on topics such as

the electronic patient record or digital health

applications.

With these resources, we aim to provide patients

and the wider public with the knowledge they need to

make informed decisions about their health data and

the use of digital health services and applications.

3 DISCUSSION AND

CONCLUSION

We are aware that our current offerings only reach a

fraction of the population and are likely primarily

targeted at those who already possess higher levels of

eHL since digital competencies are a prerequisite for

assessing online information and participating in

online activities. Events on (digital) health are

probably predominantly attended by individuals who

already have a foundational level of HL and

potentially some scientific knowledge. The major

challenge is reaching those whose eHL is particularly

low and who less frequently take advantage of digital

health-related information opportunities. According

to the findings of the HLS-GER 2 study, these

individuals are primarily the ones with lower general

HL, older adults (65+), individuals with lower

literacy skills, lower educational levels, and/or lower

social status (Schaeffer, Gille, et al., 2021).

Strengthening eHL is thus a societal task that requires

an inclusive and coordinated approach.

In their systematic literature review, Geukes et al.

(2022) emphasize the urgent need for an evidence-

based eHL concept to modify and implement digital

technologies and health information in a target group-

specific and resource-oriented manner. Digital

technologies offer the possibility for individualized

and needs-oriented design of health-related

information. However, to be effective, this

information must be understood by users and, within

setting-based prevention, must be adequately utilized

by organizations and integrated into structural

development processes.

The measures outlined in section 2.6 are

formulated in a rather broad or overarching manner

and leave the stakeholders addressed – such as

educational institutions, medical associations,

political actors (e.g., the Ministry of Health), research

sponsors, and social actors – leeway in their specific

design and implementation. Detailed proposals for

concrete practical implementation would have been

too extensive for this position paper and would have

gone beyond its scope. We are aware of the fact that

some of the proposed measures are very difficult to

put into practice, such as the enablement of citizens

through healthcare providers who usually only have a

very limited amount of time per patient and in some

cases also lack the appropriate eHL and educational

skills. To overcome the absence of digital and

educational skills, medical study curricula or medical

training plans should pay more attention to these core

competencies. The restricted time per patient is a

major general problem for which we unfortunately

cannot offer a quick solution. To overcome this

problem, the entire German healthcare system would

have to change.

Another important point to consider is the

widespread use of social media platforms such as

Instagram, Facebook, Tiktok, and X, which many

people rely on as an additional source of (health)

information (Suarez-Lledo & Alvarez-Galvez, 2021).

Given the limited control over misinformation on

these platforms, it is essential to address the social

media aspect when teaching skills to distinguish

between trustworthy and unreliable sources. Raising

awareness about the ease with which anyone can use

these platforms to disseminate (also unverified or

false) opinions and share misinformation on health

topics should ideally foster a healthy skepticism

toward health-related claims made by private

individuals, companies, and organizations.

Overall, eHL can be a critical competence and a

key predictor for effective health prevention and

promotion (Chang & Schulz, 2018). A meta-analysis

from 2023 also found a positive correlation with

health-related behaviors, suggesting eHL may act as

a mediator between the consumption of health-related

information and subsequent changes in health-related

behaviors (Kim et al., 2023). It must therefore be

fostered through targeted education and awareness-

raising measures. Programs to promote eHL must be

tailored to the specific needs of different user groups

and life environments. Only if these programs are

found, assessed, and adequately applied by users,

they can have a positive impact on health by

supporting effective health promotion and

prevention.

Finally, it is crucial to ensure that all citizens can

benefit from advances in healthcare made possible

by digitalization. This will be essential for

promoting the health and well-being of society in the

digital age.

Approaches to Promoting Patients’ and Citizens’ eHealth Literacy

763

ACKNOWLEDGEMENTS

This work is part of the project “Medical Informatics

Hub in Saxony (MiHUBx)” which is funded by the

German Federal Ministry of Education and Research

(grant number 01ZZ2101A).

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