Table 4

Joint display of key quantitative and qualitative findings for each eHealth literacy dimension

Main quantitative resultsDescription of qualitative themesRepresentative quotes
AccessTheme 1. Considering non-ICT-accessible groups
  • High level of internet access (90.1%)

  • Devices to go online available (eg, 80.2% smartphone).

Health professionals
  • Equipped by their employers with laptops (80.9%) or desktop computers (85.1%), rarely smartphones (4.3%)

  • Experts were surprised about the high level of access to ICT. In their perception, access or internet connection is often problematic. Mainly patients >75 years old or some not interested or capable are discussed to be insufficiently equipped and literate to use ICT.

  • Experts emphasised that the needs of the non-ICT-accessible group of patients must be taken into account when developing a model of care.

  • «I am now surprised that many are already so well equipped with the internet. That (MANOSS results) surprised me a lot. Because of the COVID situation the feedback I got was obviously different. But I can't verify that, it's just a subjective impression.» (Nurse, national expert group)

  • «In our (…) project, we notice the cut in accessibility, which is around 80 years old. Those up to 75 are very accessible online, (…). But it's like this, you mustn't forget the others. At some point during this Corona period, we also realised that.» (Physiotherapist, national expert group)

Theme 2. Fitting patients’ and professionals’ technology
  • Experts explained that patients’ smartphones often do not have the capability to do video conferencing.

  • Experts discussed that professionals are limited by ICT available at workplace and do not want to use their private devices for communication with patients.

  • Experts agreed that for good acceptance, new eHealth solutions need a good fit with both patients’ and professionals’ devices (provided by the hospital).

  • «And (…) some phones do not have the capability to do visual.» (Occupational therapist, international expert group)

  • «We have the same experience, email works great. Resistance would certainly exist with technology that is not available from the hospital. Almost everyone here has an iPhone, but they are not willing to use it for patient (contacts). These are the technical hurdles, which would have to be overcome by professional devices.» (Nurse, national expert group)

Understand and appraiseTheme 3. Providing timely, understandable and safe information

  • Relatively high rating of comprehension of eHealth information (mean=6.7, 95% CI: 6.2 to 7.3).

  • Less confident evaluating reliability of eHealth (mean=5.8, 95% CI: 5.1 to 6.4) and finding health apps (mean=4.8, 95% CI: 4.2 to 5.4).

  • Online offers seldom raised their medical knowledge (mean=4.3, 95% CI: 3.7 to 4.9) or helped for making health decisions (mean=3.9, 95% CI: 3.4 to 4.5).

Health professionals

  • Felt able to assess reliability of eHealth (mean=7.2, 95% CI: 6.6 to 7.8), which improved their knowledge (mean=6.3, 95% CI: 5.4 to 7.1)

  • Do not feel very confident in finding health apps for their patients (mean=5.5, 95% CI: 5.0 to 6.1)

  • Rarely use online information for making decisions about the health of their patients (mean=5.0, 95% CI: 4.3 to 5.6)

  • Experts discussed that because of patients’ diversity a range of information offers (technology based and not) need to be accessible.

  • Experts explained that due to the variable SSc progress and course, online information and pictures can be frightening for patients. Experts described patients’ difficulties of navigating appropriate and safe information over time. In particular for SSc self-management, pragmatic and practical information is rare.

  • Experts stated that patient organisations are good information sources for professionals as well, especially for people who do not know much about SSc.

  • Experts agreed patients need information tailored to their understanding of SSc and self-management. The information provided should encourage people’s coping of living with a rare condition by taking down the medicalisation of the disease. Professionals could guide patients to find appropriate information, but need to be educated about patient information themselves.

  • «When we developed our self-management program, (…) we did ask them what kind of format would they like, and very surprising for us, because we thought that everybody wanted an internet program, what a lot of people wanted was a book. (…), some people find it easier and we didn’t really see that this was depending on age. That was kind of interesting.» (Occupational therapist, international expert group)

  • «That (Google search) is still really frightening. (…) The information is better than it was, but I think it is still horrifying for people.» (Patient, international expert group)

  • «Side effects of medicines: are often not bad but annoying. What can I do then? A visit to the doctor would often not be necessary but there is no information source/reference book especially for systemic sclerosis where I can find out what can be done about it. Doctor visits could be saved.» (Patient, quantitative, open text)

  • «One of the ways we tried to overcome the fear factor was the Wikipedia page on the rare condition that I work on. It is actually managed by the head of the patient organization. (…) And we found that really helped change peoples’ perceptions in the last couple of years. We partner with him (patient) to make sure that the information and data is updated regularly. But we found that was very helpful for kind of taking down the medicalisation of it and really thinking of it as a human experience of living with a rare condition.» (Nurse, international expert group)

Theme 4. Empowering end-users in ICT and health decision-making skills
  • Experts discussed that patients who are afraid to learn how to use new technologies, but also professionals with a low affinity towards ICT can be limiting for eHealth implementation and use.

  • Disease information—even if it is easy understandable—still needs explanation for patients. Not everything is going to happen to everybody and some decisions are easier if shared by patients and professionals.

  • Experts agreed that user empowerment is crucial for sustainable ICT implementation. Furthermore, (shared) health decision-making competences need to be trained—by patients and professionals and integrated systematically in technological approaches.

  • «I do not feel able to familiarise myself with the new technologies and learn how to use them.» (Patient, quantitative, open text)

  • «How open am I (to ICT), how affine am I, also in counselling, what experiences have you had yourself, how accessible do you experience it, what impression do you have of the quality? It's very difficult to cut that out. And if I don't have any affinity at all, then it becomes more difficult.» (Physiotherapist, national expert group)

  • «What we would say to new patients, don’t read a section if it doesn’t involve you. You know, not everything is going to happen to you.» (Patient, international expert group)

  • «Many times we talk about shared decision making, but we never talk about how to do it. There are several tricks, ways to do it. (…) how we could improve it this kind of shared decision making, because it should not stay with a principle.» (Physician, international expert group)

ApplyTheme 5. Addressing perceptions of end-users
  • Used the internet primarily for private purposes (eg, communication, mobile applications).

  • 8.8% of internet-users never used it to search for health information, respectively, 44% only a few times a year.

  • Indicated relatively little experience with web-based self-management support. Online support groups and forums were rarely (21.7%, 14.4%) or never (76.1%, 83.3%) used.

Health professionals
  • Used the internet at least weekly to send and/or receive e-mails (95.7%) or search for information on diseases/therapies (72.3%).

  • Used email weekly for patient communication (40.4%)

  • Rarely used the internet weekly for reminding patients of an appointment (14.9% weekly) and for discussing in online forums with patients (2.2% several times a year)

  • Rarely used either eHealth apps in their private life (42.5%) and recommended them to their patients (29.8%)

  • Experts reported that patients and professionals have little experience with the use of eHealth services such as apps and internet programmes. They can hardly imagine how those technologies are supposed to work in their clinical practice.

  • Out of this uncertainty experts formulated end-users concerns, such as lacking human, financial and time resources. Especially the patients concerned about data security and becoming dependent on ICT.

  • Experts agreed that eHealth services need to be well planned and adjusted to the existing clinical procedures but also to the personal and financial conditions. To achieve this, end-users’ worries need to be taken into account by engaging stakeholders in the development process.

  • «I mean what I do personally, I communicate a lot with patients by email and that works. That works. But on the other side now, if we're just talking about communication, exactly, you can ask yourself, do you have the resources through an app or is there a person in charge then? How do you want that to work?» (Rheumatologist, national expert group)

  • «If you ask the rheumatologists, they fear the workload that is associated with it (…) Certainly, every stakeholder sees the potential, but every stakeholder has some fears or requirements.» (Rheumatologist, international expert group)

  • «I am still wary of too much data shared with the health insurance companies.» (Patient, quantitative, open text)

  • «The most powerful uptake of this (fears), is to engage stakeholders in the development process, so including patients in the development process and also to underscore that this is going to help relieve workload for healthcare providers, and try to extend their care rather than replace it.» (Nurse, international expert group)

Theme 6. Putting people at the centre of technology
  • Experts emphasised the fears of patients and professionals loosing interpersonal interaction and relationship because of ICT use.

  • During the COVID-19 pandemic they realised that online contacts are working and relieving—even if they did not know each other before.

  • Experts discussed that eHealth programmes and onsite care need to be closely linked (eg, contents of eHealth programmes to be taken up in clinical visits).

  • Experts agreed that eHealth is an additional way of giving care, not a replacement of all or most of the visits. Optimally it is closely linked and coordinated with onsite care for example in SSc symptom management.

  • «I am against any digitalisation - a personal relationship with a professional is/would be important in the recovery process. Today's tendency to digitalise everything is extremely annoying and I hope that this will not progress even more in the health sector.» (Patient, quantitative, open text)

  • «Corona has probably also pushed the whole thing a bit. As a high-risk patient, I wasn't allowed out and they weren't allowed to receive patients either, so it was partly via video conference or telephone. This wasn’t bad at all. I simply have to reserve this hour and I don't have to stay there for 1.5 hours and then come back.» (Patient, national expert group)

  • «The most important findings were, that this (eHealth) is seen as an additional way of giving care, intermittent and mainly patient-driven, when patients feel the need for additional questions, additional topics to be discussed, and not as kind of replacement of all or most of the visits.» (Physician, international expert group)

  • «We know from SCQM (ie, Swiss registry for inflammatory rheumatic diseases) that it is very much hoped, especially when it comes to symptom tracking, which can also be a part of dealing with the disease, that it would be quite decisive that in the consultations, really what people have followed over a certain period of time, that this is taken up. That the doctors look at it with the patients and if they were in a nursing consultation or physiotherapy/occupational therapy, that someone looks again at what was during this time, what they have monitored.» (Physiotherapist, national expert group)

  • ICT, information and communication technologies; SSc, systemic sclerosis.