Despite progress in the global digital transformation of health and health care, there remains disparities in skills and resources when accessing online health systems. Overcoming these disparities requires efforts to ensure access for all to the equipment needed and the acquisition of skills to use online sites and services. Digital health communication and health care services should be easy to use and adapted to individual needs. 

Context

‘Digital’ is part of all spheres of life. Online spaces have become a central environment for communication and engagement, learning and work, but also for health promotion, disease prevention, health system interventions, self-care, and self-management. 

Health 4.0 is a term used to describe the digital transformation of health and medical care, and digital health can be considered knowledge and practice linked with the development and use of digital technologies to improve health. Digital health literacy (i.e., e-health literacy) is one form of health literacy which covers the skills needed to access and navigate digital sources of health information and tools. 

Having relevant digital competencies, equipment and internet access are determinants of health which should be secured for all. 

Access to digital spaces is particularly important when mobility is restricted or when people live in rural or remote areas. As compared to traditional communication strategies, digital spaces support accessibility and the widening of access to health information for different people and groups, irrespective of personally identifiable characteristics such as age, geographical situation, ethnicity, age, education, or race. 

Telehealth and digital technologies make it possible for people to manage their care with remote support from health professionals. Wearable devices and smart phones create a constant connection between patients and clinicians, to be able to raise the alarm in the event of an emergency. 

Challenges

While 91% of European households have internet access, some still do not. Access differs between urban and rural areas and between countries in general . Hence, there is a need for the constant development of both online and offline health information and services. 

Although the digital transformation of health and medical care may bring many benefits it may also reproduce and reinforce existing inequalities related to restricted mobility due to disparities in skills and resources and the lack of preparedness of health providers to consider digital health inequity and individuals’ experiences about online health technologies. 

Many new online health services and technologies may only be available for those with relevant knowledge, skills, and financial resources. However, for people suffering from vision or cognitive impairments or rare diseases, or for migrants and the homeless, online health services might be lacking or otherwise inaccessible. 

Actions

The development of digital health services and tools, and individuals’ competencies to access and to use them, have the potential to increase equity in accessing health care of appropriate quality and to decrease health disparities.

Individuals need:

Systems have the responsibility to:
  • general digital skills to use devices and applications;
  • knowledge on available digital health system services (sites and applications), and relevant health concepts, to find appropriate information in (online medical) records;
  • skills to find, navigate and use relevant digital health system sites and services;
  • skills to interpret and critically appraise the results of various health apps;
  • (online) communication skills with health personnel in eHealth.
  • develop secure easily accessible internet access for all people (incl. homeless people, etc.);
  • offer support to use information technologies;
  • develop digital health communications and health system services (sites and applications) that are easy to use and adaptable for individuals with different needs;
  • develop health system providers competencies in using online health services;
  • develop health system providers’ competencies that are sensitive to the different needs of individuals who are using digital technologies and services, for example digital health service-related mediators who help communities as well as people in vulnerable situations.

 

COVID-19

In Europe, before the Covid-19 pandemic, nearly 40 % of people lacked the basic digital skills needed to access digital spaces and services . Such a divide increases vulnerability in reaching timely and appropriate health care. It also increases exposure to various unfavourable health indicators, such as depression and loneliness. During the Covid-19 pandemic, this vulnerability increased, especially among older persons, resulting in inequities in vaccine access across countries. 

The Covid-19 pandemic demonstrated the importance of being able to access digital platforms on an equal basis. Digital technologies, such as mobile phones, made it possible to organise rapid contact tracing, symptom checking, advice seeking and receiving online health care (e.g., tele-medicine, online prescriptions), and to advance public communication and education. With billions of people in self-isolation, digital environments enabled access to valid and updated information, including self-care guidelines and health-care services. They provided a vital means for people to connect with each other while minimising their exposure to infectious disease.

 

 Digital access for older persons

During the Covid-19 pandemic, many older adults used traditional media, such as television and newspapers, as sources of information about the virus and protective measures. These were accessible to nearly everyone, whereas electronic information was accessible to less than half. It is important to secure access to appropriate offline information along with the access to online information.

Those with limited levels of education, who live alone or lack social support or have impaired cognitive functioning are often more challenged when accessing digital spaces. Significantly older persons (i.e. persons over the age of 85) are less likely to use digital devices and to access digital information.

 

 Mediation for Roma - Latvia

The Covid-19 pandemic significantly increased the challenges facing Roma parents and children alike, and communication and dialogue between Roma families and municipality institutions. 
In March 2020, the Ministry of Culture updated its Guidelines for Roma mediators to provide Roma mediation services at the municipal level. The Guidelines include the provision of regular information to Roma families on prevention measures regarding the Covid-19 virus. In February 2021, additional financial support for Roma mediation services was provided to cope with the constraints and precautionary measures related to the Covid-19 pandemic. 

 

 Access to online learning for Roma children - Greece

Following a ministerial decision to suspend all school services during periods of lockdown, it was decided to support Roma students attending primary and secondary education. In cooperation with the Ministry of Education and Religious Affairs, equal access and distance learning for Roma students was ensured by offering them a 200 euros voucher to purchase equipment (tablet, laptop, desktop). Τhe voucher was awarded based on low family income (up to 6,000 euros) and social criteria which resulted in support given to 325,000 families with 560,000 dependent children and young people aged 4 to 24 years.

 

Good practice

Support for parents (from early pregnancy until the child reaches 6 months) via the ‘Baby Buddy’ App – Cyprus

 Aim and objectives:

The transition to parenthood presents opportunities to promote mother-child health. Digital innovation can support access to timely and valid information for all, key component of WHO’s Respectful Maternity Care. Making purposeful use of technology, the Baby Buddy Forward project (2017-2021), an Erasmus+ project led by the Cyprus University of Technology, developed a population-level digital health promotion tool for enhancing health literacy during the transition to parenthood. The project formed a European strategic partnership with international and local partners with the aim of developing a “proof of concept” for cross-national digital innovation exchange by adapting the award-winning app, Baby Buddy, (developed by UK partner Best Beginnings) to the socio-cultural and healthcare system of Cyprus. The Participatory Action Research (PAR) framework employed in the process allowed to engage with the professional, NGO and parent community to deliver a locally relevant resource for future parents and a valuable tool for assisting healthcare providers in their educational role. 

 Method:

The Baby Buddy Cyprus webapp provides a day-to-day companion by offering evidence-based information and emotional support during the transition to parenthood covering the journey from early pregnancy to birth and up to the first six months of the child’s life. Based on guidelines, research evidence and best practice, the Baby Buddy Cyprus webapp delivers “daily messages” in five languages (Greek, English, Russian, Turkish and Arabic), purposefully matched to the stage in the journey as well as over 400 FAQs, Glossary and 220 short videos featuring health professionals providing advice, parents offering support or role-modelling the interaction between professionals-parents. 

 Outcome:

More than  3000 parents have registered so far since the official launch of the webapp in March 2000, a significant number in a cohort of 10000 birth per year in Cyprus. Furthermore, all video material which can also be accessed through the Baby Buddy YouTube Channel have over 30000 views per month from all over the world. The societal contribution of Baby Buddy has been recognized in recently receiving two awards: Gold Award for “Prevention and Health” by Cyprus Responsible Business Awards and Bronze for “Contribution to Health By an NGO” by Cyprus HealthCare Business Awards
Beyond the main deliverable (the Cypriot version of Baby Buddy), the structured iterative research process adopted is an example of good practice for fostering community partnerships. Both method and lessons learned are highly transferrable to other contexts. All local mother-child scientific bodies participated in the process, and as such, the project achieved to break down silos, cross traditional divisions and fostered synergies towards a common goal. More importantly, it provided an academia-led platform for local NGO, Birth Forward, to be an equal partner in the conversation and further their advocacy work.

 Added value:

The Baby Buddy Cyprus webapp is a high-quality online learning environment, based on guidelines, research evidence and best practice, covering the journey from early pregnancy to birth and the first six months of the child’s life. The participatory process used to customise the material to priorities of the Cyprus healthcare system and fine-tune to the socio-cultural setting involved over 800 parents and health professionals. This process raised consciousness through reflection among maternal-child care professionals. Understanding the context from the perspective of the parents, and the extent to which they currently feel supported, offers much-lacking insights for practicing and future health professionals and can impact the process of improving the quality of antenatal education and care provision.

 Baby Buddy Cyprus

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Digital health system – Estonia

 Aim and objectives:

Estonia’s health service has been digital for 12 years. More than 99% of the data generated by hospitals and doctors is digitised. 

 Target group:

Citizens can access their own medical records via a super-secure online portal and choose who gets to look at those records. 

 Method:

Many health services happen online — from video consultations to e-prescriptions. Services are intersectoral, also including notifications of death. For example, once a death is registered online, notifications are automatically sent to that person’s workplace, the tax office, and the population registry.

 Outcome:

The system is highly transparent and health professionals can communicate easily with patients. Moreover, patients are empowered to ‘lock’ and ‘unlock’ their own data thereby deciding who has access to their data. Moreover, being highly people-centred, citizens are also involved in key decisions about the system.

 Added value:

Trustworthiness is built into the system’s design. Every time someone accesses a patient’s information, it is logged. No one can check the medical records just for curiosity. The system is designed to integrate citizen science to inform and qualify digital services.

 Digital health system - Estonia

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eHealth portal – Denmark

  Aim and objectives:

There is an urgent need to break down industry silos and increase collaboration to drive progress towards a patient-centric and cost-effective model. Denmark has been at the forefront of many IT initiatives within health services. The majority of these initiatives are based on a common infrastructure. The Danish National eHealth Portal, known as sundhed.dk ("sundhed" means "health") helps to promote the optimisation of the Danish healthcare sector. 

  Target group:

Sundhed.dk is a public, Internet-based portal that collects and distributes healthcare information among citizens and healthcare professionals.

All Danish citizens have access to Sundhed.dk, enabling patients to communicate, and patients and their families to get an overview of correct and updated healthcare information, making the services appear close-by, open and familiar. Every citizen has his/her own personal page (available upon identification), which reflects the specific situation of this particular person.

  Method:

Sundhed.dk is a partnership established between all public health authorities in Denmark. The platform builds on a role-based and personalised, customizable portal environment. The portal provides information to a large range of user groups: physicians, GPs, pharmacists, dentists, chronically sick, frequent users, occasional users, etc. Every user group has its own special requirements with regard to the information it needs and how it is presented. To handle all these user groups, almost 100 different applications are needed and updated every three months. 

  Outcomes:

Sundhed.dk has transformed the Danish health service from consisting of information islands of independent, individual solutions and databases, each with its own limited group of users, into a structure that is based on the joint use of standard solutions and sharing of data. In helping every user who logs on to the portal via personal identification, the portal has been built in such a way that it adapts the presentation to its user needs, integrating the several channels of technological information into one. 

  Added value:

The portals range of information and services has proved that it is possible to work across sector borders and specialist fields to present the user with a single point of entry that provides a general view and guides the user to the relevant information and the relevant services. Thus, Sundhed.dk integrates systems that are specific to the Danish health service but other regional or national health services, or completely different sectors or industries, will be able to obtain similar benefits by making use of the experience gained from sundhed.dk of building transparency and sharing information and systems. 

 eHealth portal - Denmark

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My Health Space: making patients real players in the management of their health data – France

 Aim and objectives:

The aim is to make a single digital portal available to all persons affiliated to the social security system. The portal is fed input directly by health professionals thanks to a system of interoperability with the software they use. My Health Space enables users to better monitor and manage their health. The overall objective is to improve medical care by centralising documents (avoiding loss and omission), improving coordination between health professionals (authorised to access patients' care history), and raising digital awareness among all users (via an ad hoc support system). 

 Target group:

My Health Space is aimed at all people affiliated to the social security system, and all they need is a carte vitale to benefit from it. This represents a target of more than 60 million users, for whom the creation of an account is automatic, with the possibility of opposition left to the user.

 Method:

My Health Space is the result of a dialogue between the Ministry of Health, the Assurance Maladie, health professionals, software publishers, patient associations and users of the health system. 

My Health Space is built around four main components: 1) a shared medical file supplied by healthcare professionals and the patient; 2) a secure messaging system for confidential exchanges with healthcare professionals; 3) a diary listing medical appointments; and 4) a catalogue of services referencing several applications. Access to the documents contained in My Health Space is entirely at the patient's discretion, and the patient can choose to hide a document or "block" a health professional, if necessary. 

Following the roll out of My Health Space in February 2022, a support strategy for all users has been put in place, with a focus on those who are furthest from the digital environment (awareness-raising and training of digital mediation players, funding of posts dedicated to the digital mediation strategy in the regions).

Numerous partnerships have been formed with associations and companies, and training has been provided to all administrative assistance offices. 

 Outcome:

The deployment of My Health Space is progressive. All French people have been notified of the creation of their account with a six-week withdrawal period. The automatic creations will be completed in July 2022. My Health Space is already used by many French people, and the software used by health professionals is currently being made compatible with their product by sector (pharmacies, medical laboratories, radiology, etc.). 

 Added value:

My Health Space is a unique tool, used by all the players in the healthcare chain but which remains in the hands of the patient. It has been co-constructed with citizens (setting up of a citizen committee), health professionals, software publishers and users of the health system, who also benefit from support in learning how to use it. This is the first time that a State digital product has been proposed in conjunction with a digital inclusion strategy. Finally, the tool meets high ethical and legal requirements.

 France – My Health Space: making patients real players in the management of their health data

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Tool

Back European Ethical Principles For Digital Health – European Union

In January 2022, the European Union set out a framework for digital health. Approved by the eHealth Network, composed of EU Member State representatives responsible for digital health, and proposed by the French Presidency of the Council of the European Union, 16 European principles for ethics in digital health were established to improve mutual understanding and to facilitate discussions on the future European regulation on the European health data space. They directly address the EU citizen and incorporate four ethical dimensions: “placing digital health within a framework of humanist values”, “enabling people to manage their own health data digitally”, “developing inclusive digital health”, and “implementing eco-friendly digital health”. 

 Base Digital Health on humanistic values

  • 1.    Digital Health complements and optimises face-to-face healthcare
  • 2.    Individuals are informed about the benefits and limits of Digital Health
  • 3.    Individuals are informed about the functioning of Digital Health services and can easily customise interactions with them
  • 4.    When artificial intelligence is used, all reasonable efforts are made to make it explainable and without discriminatory bias

 Enable individuals to manage their Digital Health and data

  • 5.    Individuals are actively involved in shaping the European and national frameworks of Digital Health and data
  • 6.    Individuals can easily and reliably retrieve their health data in a commonly used format
  • 7.    Individuals can easily get information on how their health data have been or may be accessed and for which purpose 
  • 8.    Individuals can easily and reliably grant access to their health data and exercise their rights, including objection when applicable

 Make Digital Health inclusive

  • 9.    Digital Health services are accessible by all, including by people with disabilities or low levels of literacy
  • 10.    Digital Health services are intuitive and easy to use
  • 11.    Individuals have access to Digital Health training
  • 12.    Digital Health services include support through human communication when needed

 Implement eco-responsible Digital Health

  • 13.    Environmental impacts of Digital Health are identified and measured
  • 14.    Digital Health services are developed in compliance with eco-design best practices
  • 15.    Re-use and recycling of Digital Health equipment is ensured
  • 16.    Digital Health stakeholders are committed to reducing their ecological footprint

 European Ethical Principles For Digital Health – European Union

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