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Discussion
General findings
Ultimately, almost half of the patient-systems that logged in were hardly active. At a first glance, this seems low. But, we were dealing with the implementation of a technological innovation of which it is known that the adoption starts with a relatively small group. Rogers argues that the adoption of an innovation takes place in stages; it starts with a select group of innovators and early adopters and then proceeds to the early and late majority.30 We, therefore, concluded that the extent of participation of those that logged in (a quarter of all patient-systems approached) is reasonable.
Amongst the group of users (50%), four user-profiles (collaborators, consumers, casuals and non-consumers), based on the intensity of use of the e-communication tool, were found. Half was regularly active in Congredi (collaborators and consumers), some were occasionally active (casuals), but also one quarter was not active.
The main users appeared to be the informal-carers. Those that gave an interview were all informal-carers. However, due to blinding, it is not known in which profile category the interviewed patient systems were active. However, it is plausible that they came from the collaborator and consumer group because, from the statements in the interviews, it can be deduced that the interviewees have at least looked at their Congredi records several times. So, it can be concluded that seven of the ten members of the collaborators and consumers were interviewed. It might be hypothesised that their characteristics provide a profile of collaborators and consumers: sons or daughters, over 50 years, highly educated, competent in computer-use and socially active which seems in line with other findings.31
The fact remains, however, that quite a number is not participating. Technical issues were not found to be a barrier because all users logged in without problems and did not require helpdesk support. From the interviews, we learned that instructions were sufficient. Because Congredi is a tool developed for professionals, it is quite conceivable that certain characteristics, such as professional jargon, would be experienced by patient systems as a barrier, but this was not the case; it was not mentioned as a barrier. However, there was a need for a certain degree of tailoring because this was a trigger for several informal-carers to stop using Congredi. Some tailoring of the screens was named, as was also an alert when there was any form of action such as mutation in the care plan or e-mail.
Issues on implementation of e-communication tools
The invitation for an interview was accepted in all cases by informal-carers. This was not unexpected, as they are known to play a crucial role in the care of these patients.31,32 It is, therefore, presumed that informal-carers were quite active within the study population. Continual support is important to them which may be why they were motivated to use Congredi.32 Human support from the provider has been shown to increase compliance, but it was not examined how often the patient-systems were proactively urged to use Congredi.33 In further implementation, this aspect needs attention. It is also advisable to focus on the informal-carers.29,34
We noted that professional jargon was not named as a barrier for use by the informal-carers. An explanation may be that the informal-carers who were interviewed were mainly highly educated and that they were sufficiently trained in these matters as semi-experts in the disease status of their parent.32,33 In this study, a tool that had been shown to be feasible for professionals was offered to patients without making many adjustments. Other studies show that modifying language is not necessary.10,35 The benefits of having information surmount language problems; however, tailoring of content is recommendable. In summary, it may, therefore, be possible to introduce e-communication technologies that have not yet been fully developed for patient-systems.
Limitations and future research
The number of active patient-systems was found to be a limitation in this study. Professional- and patient-related factors may play a role. Three components could be distinguished: (1) characteristics related to the professional (amongst others netiquette), (2) characteristics of the patient (state of health and active role of the patient-system) and (3) characteristics of the caregiver–patient relationship (trust and the degree of insistence on using Congredi).
In our research, as in others, it seemed that the professionals who were using an e-communication tool could do this better; the new professional–patient communication patterns in the CFL need attention.17,21–23,26 A CFL is important as a catalyst for effective eHealth technologies.11,16 Congredi was found to be suitable for the CFL because all five stages of the CFL could be run through.16 However, although the Congredi system appears to meet the conditions for the CFL, patient-systems perceived the CFL to be limited. An explanation could be found in the way of use by the professionals. The records showed that on average 3.82 professionals were connected. That seems a realistic number considering the patient population, though the interviews showed that not all professionals were linked and not all were active because patient-systems did not receive reactions to their e-mails. Both were experienced as a barrier.
Concerning the patient-related factors, research shows a relationship among poor health, multi-morbidity, many doctor visits and high e-communication.36 Because our patient-population partly met these characteristics it could be assumed that this group was amenable to an e-communication tool, specifically when their situation worsens.37 Another influencing factor on the use of eHealth systems is trust.33,37–39 The sample selection was based on trust between patient and professional, which may have led to an active role as nearly half of the sample logged on to Congredi.
We did not perform sophisticated qualitative analyses; we focused primarily on the topics that were known from the literature, and in the interviews no other topics were raised, even if explicitly asked.
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