Keywords

1 Introduction

One of the main objectives of digital health can be perceived as generating a flow of patient data to devices and/or health professionals, in order to provide patients with information on their health and how to handle or improve it, for example, in large digital healthcare services, where the circulation of data is between clinicians, patients, and devices (Vayena et al. 2018). In Norway, helsenorge.no is an example of a digital healthcare solution (DHCS), whereby users get messages and letters from different health services, can book or keep track of appointments with general practitioners, and see the status of referrals to hospitals or specialist doctors, health centres, and municipal healthcare services. It is also possible to find a consolidated list of prescriptions for medicines and other items. Whilst a motive for offering helsenorge.no and other services is to provide what the Norwegian Directorate of Health describes as quality-assured information and self-service solutions (Helsedirektoratet 2020), within the complexity that exists in the current organisation of health services, one cannot ignore the fact that a significant part of the population lack the necessary skills to use and benefit from digital tools for promoting health and delivering healthcare. In other words, there is a deficiency in (digital) health literacy. As far back as 2006, Norman and Skinner (2006) warned that half of the adult population in the United States and Canada lacked the skills necessary to effectively engage in an information-rich society and that DHCSs provide little value for such citizens. Whilst the population’s digital skills and digital use have increased since 2006, findings show that, amongst others, people aged 60 and over still experience challenges with digital participation (Bjønness et al. 2021). At the same time, such people constitute a group with an increasing demand for general practitioner (GP) health consultations in Norway (Statistics Norway 2022a). In 2030, for the first time in Norwegian history, the number of those aged 65 and over will be higher than the number of younger people (aged 0 to 19) according to Statistics Norway (2020). Furthermore, one out of five of the whole population will be over 70 years old by 2060. We can therefore see a significant increase in ageing in Norway for many years to come. This constitutes a double challenge, the demographic development (more elderly people), and the fact that DHCSs are needed to cope with the increase in demand for healthcare. If DHCSs realise their potential for improving citizens’ health and thus contribute as a useful tool for developing sustainable health services, the gap between what is provided, and what people can access, should be recognised and remedied (Norman and Skinner 2006). Regarding the latter, and knowing that several people struggle with the use of technology, the overarching question raised and addressed in this chapter is:

  • How should sustainable digital healthcare solutions be developed to enhance health literacy whilst adapting to various users’ needs?

The aim in this chapter is, therefore, to investigate what is required of health services, what is required of the users and potentially their relatives, and not least, what is required of technologists and others developing the DHCSs.

2 Theoretical Background

Motivators for the continuous development of digital healthcare services can be found in concrete digital health vision statements by the World Health Organization (WHO). WHO recognises that digitalisation has the potential to radically change health outcomes if adequate resources are allocated to governance, people, and processes. Sufficient resources are needed to provide opportunities for necessary adaptions to increasingly digitised health systems and services. Together with national strategies and visions for healthcare digitalisation, digital health can improve both the efficiency and cost-effectiveness of care (WHO 2021).

Contemporary DHCSs are developed to provide improved access to health-related information to care providers (Shaw et al. 2018) as well as to facilitate patient engagement (Birnbaum et al. 2015). The aim is to make it easier for the public to actively participate as patients in a complex healthcare system (Shaw et al. 2018), and to make it more effective for healthcare workers experiencing an increased workload due to the increment in the number of elderly patients in need of care (Shah et al. 2021). This calls for an additional need for skills complementary to health literacy, so-called digital health literacy, i.e. the ability to appraise health information from electronic sources and apply the knowledge gained for addressing or solving a health-related problem (Smith and Magnani 2019), which is also seen as an extension of health literacy (Palumbo et al. 2022; Dunn and Hazzard 2019). Necessary skills associated with the latter are, among others, the ability to use computers and applications such as search engines to accomplish tasks efficiently (Norman and Skinner 2006; Smith and Magnani 2019). Digital health literacy is further perceived as a crucial factor for cost reduction in healthcare and for limiting the sector’s environmental impact; thus, it plays a fundamental role in achieving sustainable healthcare services (Palumbo et al. 2022). Additionally, Dunn and Hazzard (2019) state that technological solutions can either advance health literacy or be a barrier and that in order to be effective, solutions should go beyond simply building literacy and numeracy skills, to building functional and critical skills. Santana et al. (2021) emphasise that in recent literature, health literacy is related to individual capabilities and to an organisation’s ability to make information regarding health and health services equitably accessible and comprehensible. Thus, an expanded definition can increase awareness of the role that various organisations play in ensuring that individuals can access, understand, and act on the health information and services they provide. Also, a broader definition may help support efforts to integrate health literacy principles into policy (Santana et al. 2021).

Furthermore, the development of DHCSs support the achievement of various Sustainable Development Goals (SDGs) included in the 2030 Agenda for Sustainable Development (United Nations 2015). Regarding, for example, the impact of DHCSs on SDG 3, i.e. to “Ensure healthy lives and promote well-being for all at all ages”, it is, according to Gerlach (2019), obvious. The opportunity to access healthcare services wherever the patient is and be able to provide universal health coverage is enormously increased using DHCSs. Even language or cultural barriers could be overcome using DHCSs. Gerlach (2019) also finds connections between SDGs 5, 10, 12, and 13 and DHCSs. As regards SDG 5, to “Achieve gender equality and empower all women and girls”, Gerlach (2019) points to applications enabling women to track their menstrual cycle or general health, which provide the potential to empower women to prevent pregnancies, or to prepare and plan for conceiving a child or ensure a healthy pregnancy. Regarding SDG 10, to “Reduce inequality within and among countries”, Gerlach (2019) emphasises that millions of people struggle to access basic healthcare services in developing countries. In such situations artificial intelligence (AI) based expert systems can, among others, provide high-level competence and as such contribute to the democratisation of medical knowledge and information. Important to note though is that such solutions need high-quality data sets and security standards regarding data privacy and protection (Gerlach 2019).

When it comes to SDG 12, to “Ensure sustainable consumption and production patterns”, Gerlach (2019) emphasises that, for example, substituting paper-based patient records with digital copies leads to a major reduction in CO2 emissions. The same goes for replacing physical visits with telemedicine. It is, of course, also important to consider the costs that come with DHCSs, for example, the requirements of devices and infrastructure that consume energy and produce electronic waste. Finally, when it comes to SDG 13, to “Take urgent action to combat climate change and its impacts”, Gerlach (2019) highlights the use of DHCSs to promote behavioural changes by, e.g. facilitating a healthier diet for healthier living, correlated with more environmentally friendly lifestyles. In addition, AI-based expert systems, solutions making use of emerging technologies like social robots, virtual reality, and augmented reality technologies have caught practitioners’ and researchers’ interest within the digital health area. For example, immersive virtual reality–based exercise video games are increasingly being used as a supportive intervention in rehabilitation programmes to promote engagement in physical activity (Shah et al. 2022a, b).

Besides the many opportunities and benefits seen in developing DHCSs, some challenges to their use also exist. Heponiemi et al. (2022) show that people over the age of 60 are associated with a lower likelihood of using online services for receiving test results, renewing medical prescriptions, and scheduling appointments. Heponiemi et al. (2022) also found that good or average digital competence counters this age-related decline in online service use until the age of 80. After that age, good digital competence does not contribute to maintaining high usage levels. These findings implicate that means should be implemented to prevent these older members of society from being digitally excluded. One way to increase online service use is to offer older people user support and another may be to focus on hedonic motivation associated with using the services (Heponiemi et al. 2022). However, challenges associated with the use of DHCSs are not just limited to the age of the user and this should not come as a surprise. More than 20 years ago, Nielsen (1999) was already pointing out potential difficulties in designing Web usability. For example, individuals with impaired vision may have difficulties using software with small text or buttons, or software that does not have proper accessibility features such as text-to-speech or sharp contrast modes. Persons with mobility impairments may have difficulties using a mouse or keyboard or may require the use of assistive technologies such as speech recognition software or on-screen keyboards. Individuals with cognitive impairments may have difficulties with tasks that require sustained attention or the processing of substantial amounts of information. Individuals who have hearing impairments may have difficulties using software that relies heavily on audio output. Also, physical and cognitive abilities are usually reduced as people age in a way that affects their ability to use software. To address these and other challenges related to diversities in people’s states of health when facing technological products and services, a variety of universal design recommendations and regulations have been formulated. For example, the European Union’s (2016) (EU) Web Accessibility Directive (WAD) aims at making public sector websites and mobile applications more accessible, harmonising varying standards within the EU, and reducing barriers for developers of accessibility-related products and services. The same applies to the Web Content Accessibility Guidelines 2.1 (WCAG) standard which became operative on 1 February 2023. According to the World Wide Web Consortium, the WCAG 2.1 standard (2018) is based on four design principles:

  1. 1.

    Perceivable: making sure users can recognise and use a service with the senses that are available to them.

  2. 2.

    Operable: making sure users can find and use the content, regardless of how they choose to access it.

  3. 3.

    Understandable: making sure people can understand the content and how the service works.

  4. 4.

    Robust: making sure the content can be interpreted reliably by a wide variety of user agents

The design principles are supported by 13 guidelines, and each of these is further broken down into specific success criteria or requirements that the service should meet. As regards accessibility, it should be noted that the Web accessibility initiative (WAI) emphasises that accessibility is closely related to usability and inclusion, in creating a Web that works for everyone, whereby accessibility addresses discrimination aspects related to equivalent user experience for people with disabilities, usability is about designing products to be efficient, effective, and satisfying, whilst inclusion is about diversity and the involvement of everyone to the greatest extent possible (WAI 2016).

Whilst WAD focuses on software-related aspects associated with information systems development, the WHO (2021) focuses on strategic aspects emphasising that digital health should be an integral part of health priorities and that countries require institutional support for the development and consolidation of national e-health and/or digital health strategies and the implementation of action plans. However, a major concern regarding DHCSs is security aspects and ethical issues, a theme addressed in the review by Vayena et al. (2018) where the focus is on ethical and policy challenges of innovation in digital health. The authors highlight different requisites to be fulfilled for digital health applications to have a tangible effect on public and individual health. Access to data is seen as vital for the development of innovative diagnostic, therapeutic, and monitoring tools. In addition to this, digital health products are required to comply with countries’ privacy, data protection, and data security requirements. Vayena et al. (2018) also state that robust and transparent accountability mechanisms should ensure the precise identification of responsibility for use of data and their consequences on individuals, families, and communities and that evidence of safety and efficacy is crucial for the success of digital health in fostering trust in both developers and regulators which will, in turn, facilitate the uptake of digital health by healthcare providers and lead to a fair sharing of benefits of digital health innovation.

3 Methodology

This study combines insights from scientific literature and empirical information from interviews with users and gathers the views of researchers with diverse backgrounds and experiences with the development and use of DHCSs. By combining these insights, the aim is to contribute to a more comprehensive understanding of crucial factors that should be kept in mind when creating DHCSs that enhance health literacy and cater to individuals with diverse physical and cognitive backgrounds rather than limiting the investigation to just one or two information sources. Thus, this study rests on different approaches for shedding light on the research topic, which relates to methodological triangulation, which, per se, is important for validation and hence strengthens the study’s trustworthiness (Saunders et al. 2019).

3.1 Interviews with Users

Interviews were conducted in Norway with people aged 67 and above, as it is considered that this group of people struggles the most with digital participation (Bjønness et al. 2021). The participants’ perspectives on the digitalisation of society and their thoughts on using DHCSs regarding aspects like user-friendliness and accessibility were given particular attention.

3.1.1 Data Collection

Since the main aim was to obtain nuanced insights into users’ perceptions of DHCSs and not to quantify, we used semi-structured interviews with open-ended questions to collect data from the user’s perspective (Kvale and Brinkmann 2015). Open-ended questions were included as they provide the desired flexibility and ability to adapt to the current situation (Saunders et al. 2019). Additionally, open-ended questions allow informants to speak freely and provide them with an opportunity to emphasise their feedback when they have thorough insights or strong meanings or experiences to share (Tjora 2012). Semi-structured interviews also allow for digressions so that topics can be explored from perspectives not considered by the interviewer in advance (ibid.).

Seven participants were recruited from a municipal course initiative called “The Digital Senior”. Thus, the informants were purposively sampled aiming for exploration and illustrations of the topic under study (Saunders et al. 2019). The interviews were conducted in connection with these meetings, with informants who volunteered to participate. Three interviews were conducted in total in January and February 2023. The interviews were performed by one researcher taking notes and lasted for 15–30 minutes. One interview was conducted with two informants together (two females), another one was conducted with one individual informant (male), and the last interview was conducted with four informants (three females, one male). Before the interviews, an interview guide was made based on the study’s purpose of shedding light on the user perspective in DHCSs. The interview guide was developed by one researcher and discussed and agreed upon among all five researchers.

3.1.2 Data Analysis

The interviews were analysed by following Creswell’s (2014) procedure for data analysis and interpretation. To prepare and organise the data for analysis, the researchers read the interview notes to get an overview and holistic impression of the data (Kvale and Brinkmann 2015). One researcher coded the data using paper, pencil, and a Word processor and established relevant categories. The initial coding process identified preliminary codes, which were processed through seven categories and finalised into two main themes. The initial codes, categories, and final themes were discussed among the researchers. The resulting themes and selected citations are presented in the result section.

3.2 One’s Own Experiences and Views

The mapping of one’s own experience and views as a source of insight into the subject matter is inspired by autoethnography, which is commonly used in sociology, anthropology, and cultural studies and is a way of understanding and interpreting the world through a personal, subjective lens. More specifically, autoethnography can be described as a qualitative research method that values researchers’ individual experiences for describing and critiquing cultural beliefs, practices, and experiences (Adams et al. 2015). The approach followed in this study leans towards what Anderson (2006) refers to as analytical autoethnography, i.e. an attempt to establish connections between the researchers’ experiences and the wider context through documentation. The subjective understanding and experiences can be broadly considered as cultural expressions and thus help to challenge and develop the understanding of knowledge (Klevan et al. 2019).

The mapping of these ‘self-experiences’ and views was carried out by a team of five researchers, including two technologists and three caregivers. The caregivers have long-term experience working with DHCSs in hospitals and primary care in Norway. A reflection has been made based on these experiences with a twofold perspective: what the caregivers experienced by using DHCSs themselves to support and have diverse communication with patients as well as the feedback they got from patients and family members after using DHCSs. The technologists have a background in informatics and health informatics and have comprehensive experience in the development and implementation of diverse DHCSs. The work started by reflecting, talking, and exchanging personal experiences related to DHCSs, highlighting challenges, and gaining insight into each other’s perspectives. Furthermore, scientific literature on international and national guidelines related to the digitalisation of healthcare services and related regulations was analysed. The connection between DHCSs as part of the development of sustainable health services and the topic of health literacy was also a natural part of these reflections. The results of our conversations are formulated in two texts that describe the perspectives of the technologists and caregivers. The views of the researchers (the two texts) are summarised in the Results section and are mainly based on the extended professional experience (20–25 years) in researching the implementation and use of DHCSs (technologists) and the extended professional experience (20–30 years) in offering healthcare services (caregivers). The researchers’ experience is based on their professional background working in Norway, Sweden, and Spain.

4 Results

Results from the interviews with the users and the researchers’ perspectives are presented in this section.

4.1 Interviews with Users

4.1.1 Competence and Need for Training

Competence was a prominent topic in the interviews. The informants highlighted both the need for competence and the need for having the ability to gain needed competence. Several informants said that their current knowledge was achieved on their own initiative and that they were self-taught and had not received any training. The informants further emphasised the importance of being brave and confident enough to try out the digital solutions themselves and not being afraid of making mistakes. The informants expressed that few opportunities to attend courses or other educational and training activities where they can go for help exist, which is illustrated in the following citation:

No one has got any kind of training in how to use digital healthcare solutions, and we miss the opportunity for education.

Some informants pointed out the need to lean on a third party to cope with DHCSs. Receiving help from a third party was described as much appreciated; however, the informants also emphasised that this is not an option for all people their age. In practice, this means that they have nowhere to turn for help. Another highlighted aspect was that receiving help from a third party not always was carried out sustainably, as the following citation illustrates:

We ask our grandchildren for help, and they just do their thing...So we do not know how to do this ourselves the next time or we forget how to...

The informants therefore pointed to the need for courses or venues for training and guidance and opportunities for meeting others for discussions and exchanging experiences, which are seen as important and contribute to further interest and curiosity in using DHCSs. The informants pointed out that some courses or initiatives to help seniors become more digitally skilled do exist and that these are useful. However, information about these events is often digital, and finding and attending these initiatives happen mainly on an individual basis.

4.1.2 Freedom of Choice: Opportunities for Personalisation

Another issue brought up by the informants was that the users are different and have diverse needs and expectations regarding DHCSs. The informants said that many seniors are digitally aware and want to cope with digital services, but also emphasised that not all seniors want to “go digital” and thus prefer information like they have been used to, for example, by letters. The informants discussed potential reasons for this, and as one of the informants said:

Of course many have gone digital, but there are some that are stubborn and stuck-in-the-mud persons, pardon my language.

In this context, the informants also emphasised that alternatives to DHCSs are valuable and stressed that no one should be forced into using DHCSs. They highlighted the need for diversification that it should be possible to opt out of digital solutions and that alternative solutions for those preferring not to go digital should exist. The informants said that it is still nice to talk to human beings sometimes, by, for example, having the opportunity to call the bank or the doctor’s office.

Even if the informants did point out challenges with DHCSs, they also reflected upon the current situation as satisfactory. They pointed out solutions they found useful and expressed that they were able to find good information online. However, they did stress that it is important to be aware of the possible vulnerable context surrounding health issues. The informants pointed out that experiencing challenges with DHCSs may become an additional burden in an already vulnerable situation. A vulnerable situation where something might be wrong with your health or well-being might make it more difficult to cope with digital healthcare applications or even to get hold of all the information that is needed.

4.1.3 User-Friendliness

Regarding the user-friendliness of DHCSs, the informants pointed to two levels: the system level and the personal/single-user level. At the system level, the informants expressed some frustrations regarding the multitude of different digital solutions they had to deal with. Different healthcare providers, such as public or private hospitals or general practitioners, use different solutions to communicate with their patients. Thus, the informants described it as challenging to know where to find information, e.g. scheduled appointments or results from examinations or other encounters with different healthcare providers. This is illustrated in the following citation:

There are quite a few systems you must deal with…What goes where? [...] And the hospital communicates both digitally and by letters…and I think we get text messages as well.

Thus, the experience of the use of DHCSs can be seen as overwhelming for the users, as illustrated by the blunt response from one informant on the question regarding the need for DHCSs: “No more data!”

Logging in to different digital applications was perceived as time-consuming both due to occasional unfamiliarity with the technology and due to what was perceived as slow systems. Additionally, system errors and system changes were also mentioned as a source of frustration due to a feeling of having to “do or learn everything over again”. Also, the user-friendliness of healthcare applications’ user interfaces was pointed out as an issue, since the seniors may have vision impairment, or their hands may be shaking, making actual use a challenge.

Furthermore, the informants also described cumbersome and time-consuming login procedures due to data protection issues. Although they understood the need for high security and confidentiality levels, the informants questioned the levels being this high and further expressed that it sometimes seemed as if security issues were prioritised over maintaining user-friendliness.

At the personal/single-user level, some issues of user-friendliness were closely related to the level of competence, but the informants also emphasised that DHCSs should be intuitive enough for the users to manage by themselves. The informants pointed out the need for “knowing how to do it”, e.g. zooming or enhancing font size:

…if you are supposed to adjust the font size on your device, you need to know how to do it. […] You need to know how to adapt digital solutions to your own needs.

4.2 Researchers’ Own Experiences

4.2.1 Technologists’ Perspectives

Regarding the wide range of DHCSs available, including patient portals, mobile health apps, telemedicine systems, and a variety of wearable technology, various systems are created with general users in mind, whilst others are created specifically for those facing unique difficulties brought on by diseases and associated widespread health issues. Due to such differences in user groups and demands, several issues, such as usability and user training, should be considered when developing DHCSs. Correspondingly, rules and guidelines are developed to help ensure accessibility, and several design issues should be considered and addressed as part of DHCS development.

For a long time, the term “universal design” has been considered a desirable objective. However, liminal cases may be forgotten, i.e. single individuals who do not fit into the general picture of the users. The effect of a specific disease can vary not only from person to person but also throughout the course of the disease. These issues should also be considered, and alternative service offerings should be provided, so that people are not excluded when, for example, their health condition has changed so that current digital health offerings are no longer accessible or useful. In addition, besides addressing accessibility and interrelated issues like usability and inclusion, whilst developing DHCSs, other technical issues also should be handled, such as interoperability, reliability, security, and privacy issues. As regards interoperability, it is vital to consider how DHCSs can integrate with other systems and platforms to provide a seamless user experience. As regards personal health information and its security, it is evident that it should be protected from unauthorised access. This may involve implementing strong encryption and authentication measures, whilst from a health legislative perspective, this issue complies with various regulations and laws. Also, as regards reliability from a medical perspective, it is vital to ensure that the service is reliable and available when users need it. In worst-case scenarios, the consequences of missing health information might be fatal for some users. Reliability, as seen from a technical viewpoint, may involve implementing robust failover and disaster recovery systems, whilst from a health perspective, this is seen to demand precise information registered by health professionals in the first place. In any case, healthcare services, whether based on human-to-human interaction or based on human-computer interaction or a mix of the two, need to focus on a form of communication and health content adapted to the individual’s needs. Otherwise, there is a risk of DHCSs ending up as generic, sterile interaction services that suit “most people” but not individuals with all their unique functional and mental requirements and specific health challenges. This was a point on which the authors focused particularly after using an age simulation suit in a class of nursing students. While wearing the suit, the nursing students were mostly thinking about general health concerns and the corresponding care needs of elderly people. However, the authors, as researchers, also focused on the suit’s potential within the context of information systems development, particularly as a revelation for systems developers aiming at user-centred designs for people with various disabilities. See Fig. 6.1.

Fig. 6.1
3 photographs. Left. A set of wearable gear. Center. A man wearing suit components, has a walking cane and papers in hand. Right. A woman wearing a simulating glass.

Age simulation suit components. One of the authors wearing glasses simulating an eye disorder. (Photo: author’s own)

Full size image

4.2.2 Caregivers’ Perspectives

It is easy to highlight both the advantages and potential challenges of DHCSs. For example, there is a concern that because of the large variety of users and user needs, there is a risk of creating systems that digitally exclude those needing health services the most, such as the elderly and those with disabilities who find it challenging to benefit from using DHCSs.

On the positive side, contemporary technology brings a lot of advantages. From a therapeutic and clinical standpoint, maintaining relationships with loved ones is essential for good health and is made possible by a variety of technological options. People with special needs or those in nursing homes can communicate by utilising a tablet or computer to converse and see their partners, kids, grandchildren, or friends. Sometimes patients can manage to organise the meetings themselves, whilst others need a little support from the staff. Being in touch with loved ones more frequently might be beneficial in preventing loneliness and despair. Additionally, it is becoming more usual for patients to have consultations online, avoiding the need to travel to physically attend a doctor’s appointment.

Another example of the use and impact of technology on health is the use of global positioning systems (GPS), which are used more frequently by people with cognitive disabilities. Those who are staying with their family can use GPS to leave the house by themselves while their family monitor their whereabouts. As a result, people with dementia, as well as their families, will gain more independence. This also makes it possible for patients to exercise more, which in turn improves their overall health – both physical and mental – as well as their quality of life.

Another viewpoint to consider is how people seeking care use DHCSs. To provide care services and DHCSs, healthcare service providers also need to modify their organisations and processes. For instance, it should be regularly assessed whether the DHCSs provided to patients are appropriate as their cognitive or physical capacities decline. Services provided through various channels should also be coordinated so that the patient’s quality of treatment is independent of the service they select. The authors also contend that providing high-quality care should always take precedence over profit-driven decisions. Finally, the authors recognise the requirement that, before deployment, a clear strategy for maximising the benefits of using DHCSs and integrating them into the current working standards should be devised. A frequent problem is the medical staff’s inability to use the newly specified DHCSs due to a lack of preparedness or expertise. Medical staff who are already overworked could feel unappreciated, unmotivated, and stressed because of this. Therefore, it is essential to make sure that the required conditions are met before introducing fresh strategies for dealing with DHCSs. Furthermore, the authors see it as essential that medical experts’ advice should be taken into consideration when developing DHCSs.

5 Discussion

The aim of this study was to investigate how sustainable digital healthcare solutions should be developed to enhance health literacy while adapting to various users’ needs. The data material has provided a more holistic understanding of the user needs that must be taken into account in order to develop sustainable DHCS that strengthen users’ health literacy. Our informants emphasised that DHCSs must be user-friendly at both an individual level and a system level. This means that the DHCSs must be as intuitive as possible and adapted to age-related cognitive and physical challenges. At the system level, there should be more standardised approaches to DHCSs, for example, in terms of user interfaces and login procedures. The latter also points to the need for organisational health competence, which affects the user indirectly and is an important part of creating sustainable health services. To become more self-reliant and health literate, the informants also pointed out the importance of the opportunity to increase their own expertise and to exercise, preferably together with like-minded people. Such meeting points or arenas for training should be publicly available and be a low-threshold service where you can come as you are. The informants were also concerned that DHCSs should offer the possibility for customisation to meet different individual needs, expectations, and challenges. Customisation on such a scale ranges from those who may just need a little “nudge” to become independent to those who do not want to use digital solutions and should not be forced into using them but be able to receive what they need and communicate in other ways, such as by letter and telephone. The themes raised by the informants are important to consider for both DHCS developers and caregivers. The themes correspond well with our reflections and experiences as researchers in this area.

The importance of, and need for, digital competencies is one of the findings from the investigation as a crucial aspect to consider while creating DHCSs. This is an aspect both emphasised in literature and by the informants. Developing DHCSs that exclude large user groups due to demanding requirements as regards digital skills may be considered discriminating and an aspect that may go against various SDGs. While active, participatory, and responsible individuals are described as the ideal that policies and services should be oriented towards (Askheim and Andersen 2023), there may be some concerns about how useful such an ideal is when some of the largest user groups in healthcare probably do not fulfil it. Important to note regarding this aspect is that whilst health literacy encompasses both a personal and organisational perspective, the latest definitions of the term emphasise people’s ability to use information rather than just understand it (personal perspective) at the same time acknowledging that responsibilities also exist at an organisational level to enable health literacy (Helsedirektoratet 2020). Several considerations, as stated by law and emphasised via various best design practices, should be considered carefully when designing DHCSs to ease the burden on individual users. An especially important aspect to keep in mind is the many demands commonly put on individuals regarding skills of general literacy, critical thinking, numeracy, comprehension, and the ability to seek information to participate in understanding and managing healthcare as emphasised by Smith and Magnani (2019) and supported by both interview statements and the authors’ own experiences. Addressing these demands puts a huge responsibility on systems engineers, and public and private organisations, and is both complex and complicated. Generally, building information systems meeting the needs and preferences of diverse users is a challenging task requiring a combination of careful planning, user research, and flexibility both in design and in information systems implementation. A few approaches to consider may be to start identifying user needs and preferences. This can be done through interviews, surveys, focus groups, and usability testing. Customisation of DHCSs can be achieved, for instance, by offering various navigation and display options based on the roles or preferences of users, i.e. by adhering to WCAG 2.1 (2018) and other well-known principles for functional design. Also, since different users may find it difficult to access the information system itself, it is advisable to offer a variety of access methods, such as mobile access in addition to Web-based access and access through desktop programmes. Along with considering probable functional and cognitive limitations among those expected to utilise the DHCSs, it is critical to consider the likelihood that certain users may lack broader knowledge about digital solutions. This raises the notion that providing proper training and support for users of the system in the form of documentation, tutorials, and in-person training sessions may be the most crucial strategy and the one that is frequently overlooked while providing DHCSs. This can help users become proficient in system usage, and at the same time, system designers can gain valuable insight into how the services offered may be improved. This is in line with the results from the interviews and with the challenges presented in the literature. More competence and arenas for learning and training are important for improving health literacy, which further contributes to more sustainable health services. Meeting places where one can discuss relevant topics on how to handle digitalisation are also important. Such meeting places enable users to share experiences and may serve as an arena for jointly solving problems or discussing issues connected to digital solutions. Furthermore, such meetings provide opportunities for training and familiarisation with digital solutions. Such meeting places could also serve as a source for feedback from users to developers or system owners. For DHCSs to be of value, people need training in how to best use/navigate them. This is true for both caregivers who use the DHCSs to communicate with patients and others, and for caretakers themselves who are expected to utilise the services offered. Furthermore, user-friendliness should be considered both on a system level and an individual level. Developers should engage the end user in designing and developing DHCSs to tailor the user interfaces and make applications suited to the users’ actual needs. Systems should be designed and developed in such a way that users intuitively understand them, thus strengthening both organisational and individual health literacy (Helsedirektoratet 2020).

6 Ethical Considerations

The informants were recruited on a voluntary basis in connection with “the digital senior” courses. One of the researchers provided an orientation about this study, and course attendants volunteered to participate and thus gave their informed consent to be interviewed either alone or in groups. Informed consent is essential according to, for example, the Helsinki Declaration (Førde 2014; Halvorsen and Jerpseth 2016). In the representation of findings from the interviews, both descriptively and through citations, informants are anonymised and cannot be recognised. This study is not covered by the Health Research Act and is, therefore, not subject to approval by the Regional Committees for Medical and Health Research Ethics (REK).

This study has also collected data through an autoethnographic approach by drawing on the researchers’ knowledge of DHCS from different perspectives (technologists and caregivers). Thus, the researchers’ proximity to the topic, and not objectivity, becomes both an epistemological starting point and point of arrival (Conquergood 2002). Ellis et al. (2011) point out that researchers do not exist in isolation, i.e. those around them will be implicated in the research process. It is particularly important to be aware of this when conducting autoethnographic studies since relational considerations must be regarded as a crucial dimension in this type of research. The researcher must therefore, in addition to the methodological approach and literature, consider how others may experience the topic under study and use personal experiences to describe it and make relevant characteristics known to both insiders and outsiders (Ellis et al. 2011). The conclusions presented in this chapter are thus not an objective truth but descriptions of the researchers’ own experiences and reflections as they appear to us as the authors of this chapter.

7 Limitations

The chosen methodology to conduct the research may have some limitations which are detailed in the paragraphs below.

Not using audio or video recordings may reduce the accuracy and constitute a risk for researcher bias. On the other hand, recording interviews may make informants more cautious and sceptical to share information (Saunders et al. 2019). We have explained the reason for interviewing seniors in this study. However, there is always a possibility for including more informants both from the senior population and from other groups, such as people with various kinds of cognitive and physical disorders or even developers. This is certainly an interesting avenue for further research. Additionally, the results of interviews reflect the private opinions and experiences of the informants.

Autoethnography is a method employed to consider and comprehend one’s own reflections and experiences as well as how these interact with the world. In this study, the opinion of five researchers with diverse backgrounds was considered. While writing this chapter, their different experiences have been discussed, and feedback from the rest of the authors has been included. The inclusion of more researchers (both technologists and caregivers) could identify additional important insights not reflected in this chapter. The researchers have experience from mainly working in Nordic countries; experience from working in other parts of the world may raise other types of concerns or challenges not identified in this chapter.

This chapter has focused mainly on groups with different ages, physical, and cognitive starting points. However, other groups should also be considered such as poorly integrated immigrants, especially women immigrants, or whom apart from a lack of digital health literacy, language may be an additional barrier (Statistics Norway 2022b). Young people with a lack of bureaucratic competence on rights and obligations may also have a higher probability of digital exclusion (Statistics Norway 2022b).

8 Conclusions

This chapter provides a broad perspective on how to develop sustainable DHCSs considering user perspectives, caregiver perspectives, and technologist perspectives to enhance health literacy. The analysis of scientific literature, interviews with users, and mapping of individual experiences of the researchers have been used to conduct the study. The main findings of this chapter include the need for taking a broader perspective when developing DHCSs considering not just the general population and their needs but also the needs of individuals and caregivers.

From a global health perspective, WHO (2023) has stated that all too often, products are developed with the unfortunate approach that “if you build it, they will use it”. However, this is far from being true: it is necessary to take a proactive, systematic approach for developing innovations based on user needs. DHCSs open new opportunities for providing healthcare. Furthermore, with the pace of technological change, the use of DHCSs will only increase in the future to support healthcare providers to offer more accessible and better care. Building systems for users with varying needs and preferences motivates the conduction of user research and testing to understand how people use the service and to identify areas for system improvements. General principles for useful design are just part of the answer. It is important to have deep knowledge of how various disabilities affect what is to be perceived as useful and necessary design, and therefore, it is vital to keep users in mind when designing and offering DHCSs. On the other hand, people are profoundly different from each other, and this presents a significant obstacle in all system development initiatives. It is also easy to forget that many people have comorbidities and that each and every condition may manifest itself differently from one person to another.

DHCSs can undoubtedly support the achievement of different SDGs, especially SDG 3 related to ensuring healthy lives and promoting well-being for all at all ages. But to achieve that, digital competence is needed, and this varies from person to person affected by, for example, age or education level. To address these issues, DHCSs need to be reinforced by both non-digital options and digital health literacy training programmes. Additionally, since a person’s health condition may be in constant flux, caregivers will continuously need to evaluate the adequacy of digital services offered and used by that person. Correspondingly, the DHCSs themselves should be subject to continuous evaluation and change, depending on for what and for whom the service is made and offered.

9 Relevance to Clinical Practice

The study provides valuable insights on how to develop DHCSs. DHCSs are important in developing sustainable healthcare services and for supporting patient-centred care, which are prominent topics in contemporary political and societal discussions on developing future healthcare services. DHCSs affect health services both from an organisational and an individual perspective, providing improved opportunities for communication and interaction between the patient and the healthcare services. Other examples may be the contribution of AI for faster and more accurate diagnostics, or using sensor technology that may enable a patient to stay at home and not be hospitalised. However, it should be kept in mind that to make use of the potential of DHCSs, patients and users need to gain a certain level of digital health literacy, which should be present both on an individual (user) and organisational level (caregiver). Thus, arenas for education and support are needed, and healthcare organisations should be aware of how their services are developed, which calls for joint interaction with developers, users, and organisations for creating future DHCSs.