In this section, we describe some of the mechanisms through which the telemedicine-based intervention brings about change. The first part describes patients’ interaction with and responses to the service. The second part describes the perspective of health personnel.
3a: Patient interaction with the service
3a1: User interaction Most patients mastered the equipment well, even though many of them lacked previous experience with computer tablets and other technological devices. Patients reported that the follow-up application was easy to use, and problems were mainly related to software upgrades and log-in issues. Some of the local centers locked the tablets so that only the follow-up application was available for the patients. None of the patients we interviewed experienced follow-up as time consuming. Several patients described that the measurements were a natural part of their daily routine:
“It has become a pleasure for me to make these measurements. It’s relaxing and it has become a habit that I’m happy to have.” (Patient 1).
Follow-up service nurses described, however, that some patients, typically those who were younger and healthier, had terminated follow-up because they felt the time-cost did not outweigh the perceived benefits.
Patients differed in their use of the information that was stored on the computer tablet. Some patients actively reviewed the measurement trends, while others left monitoring and interpretation of the results to the follow-up service. There were also examples of next of kin who reviewed the measurement trends closely. Patients who more actively reviewed their trends gave the impression that they learned more about their symptoms and to better cope with their health condition.
Patients described their reactions to measurement results in different ways. Most patients expressed that performing regular measurements led to an increased sense of safety. Some patients also described that taking the measurements could be encouraging, especially if the results were better than they expected. Abnormal measurements, however, led to feelings of insecurity and anxiety among some patients.
“… and it’s like when I see the measurement and “oh, this is not good”, then I don’t like it. The next day it could be “wow, today I am doing well”, so it’s a bit of both. But I’d like to say that it’s comforting to know that I can call them [the follow-up service] or they can call me.” (Patient 2).
Follow-up nurses reported that a small number of patients terminated the service due to stress and anxiety related to the regular measurements.
The intention of the individual treatment plan was to increase user involvement, and to enable patients to immediately react to changes in their health status. However, patient interviews gave little support to the hypothesis that individual treatment plans improved patients’ sense of user involvement. Follow-up service nurses and local center managers, on the other hand, stressed that the individual treatment plan helped patients act on symptoms of exacerbation faster, for example by taking antibiotics or seeking professional help. The contrasting results may be a consequence of selection of patients for the interviews. Patients who consented to being interviewed may have been healthier and therefore less dependent on the individual treatment plan than the average patient in the trial.
3a2: User satisfaction The effectiveness analysis of the trial found that 12 months after inclusion, participants in the intervention group were significantly more satisfied with the follow-up of their health compared to the control group [
21]. Semi-structured interviews with patients largely confirmed these findings. Patients reported that the follow-up service nurses were attentive and genuine, and that they felt a personal bond with the nurses. There was a rather large degree of personalization of the intervention depending on patient needs and preferences, and this generated value for the patients. Patients who initially experienced that the follow-up was too frequent or invasive, made necessary adaptations in consultation with the nurse.
Almost all interviewed patients reported that they felt safer with telemedicine follow-up. Several elements contributed to this, including users gaining knowledge about their own illness and health, that a nurse was monitoring their measurements, and that they could contact the follow-up service if needed.
Among the patients, there was broad agreement that the intervention contributed to increased knowledge about one’s illness and health. The follow-up service nurses worked actively to guide and motivate patients, which contributed to improved understanding of their condition and symptoms. A nurse said that even if some of the patients experienced deteriorations, their ability to perceive their body’s signals and symptoms improved, such that they became better at taking care of their own health in the longer run. The findings of increased understanding of one’s illness was also confirmed in the effectiveness analysis [
21].
We also studied whether the telemedicine intervention affected the everyday life of the patients in a broader perspective. In interviews, most patients reported that the telemedicine follow-up did not affect their lives, which were in accordance with our previous quantitative analyses of survey data [
21]. Some patients were too sick to leave their homes for trips or social activities, although the telemedicine follow-up had improved their feeling of safety. Other patients, who were healthier, were not impaired by their disease and lived their life like before. We were, however, given examples of patients who dared to live a more active life, for example by travelling abroad or to their cabin, because they now had better tools to understand their illness and symptoms.
One of the aims with telemedicine-based follow-up was to reduce the use of other healthcare services, for which our results from the effectiveness analysis was mixed [
21]. While most of the interviewed patients did not experience significant changes in their use of healthcare services, some gave examples of changes. One patient reported that she previously received HCS daily, while she now only needed assistance with showering. A follow-up service nurse described a cancer patient who did not want her neighbours to see the home-nurses car in her driveway and was pleased when she could receive telemedicine follow-up. On the other hand, project staff reported in interviews and workshops that some patients were unwilling to reduce their use of HCS even though this would be medically justified.
Most patients went to regular check-ups with their GP and specialist doctor at the hospital, and for most of them the frequency of these consultations did not change in response to the telemedicine follow-up. There were exceptions to this: some patients experienced seeing their GP less often, while others experienced more frequent consultations because either the patient or the GP wanted an extra consultation in response to abnormal measurements.
Although not all GPs were interested in the home measurements, many patients and GPs stressed that telemedicine follow-up improved the quality of consultations because of the patients’ increased understanding of their symptoms. Patients and some GPs reported that it was useful to review the home measurements together, and that the increased patient involvement led to higher quality discussions in the consultations.
It was difficult for the patients to evaluate the impact of the telemedicine follow-up on unplanned hospital admissions. A couple of patients were, however, certain that admissions had been avoided due to the telemedicine follow-up since deteriorations had been noted and handled earlier.
Taken together, it seems that the greatest value for the patients comes from the contact with the follow-up service, rather than from the monitoring of vital signs. Due to the complexity of this trial, it has not been possible to quantitatively investigate further which parts of the intervention bring the greatest value to patients.
3b: Healthcare staff responses to the service
3b1: Follow-up service responses All measurements were sent to the follow-up service. In case of an abnormal measurement, the nurse would call or write a message to the patient. Often, the patient was asked to make a new measurement, and sometimes it turned out that the initial measurement had been faulty.
Several informants pointed out that operating the follow-up service requires a special skill set. Follow-up service nurses must be able to interpret the developments in reported measurements, while being able to use digital communication with patients and to identify changes in their health status based on the tone of the patient’s voice or a video call. Thus, the competence of the follow-up service nurse is central to the service.
“… [the follow-up service nurses] must be the kind of person who are comfortable making decisions even if they haven’t had the chance to see and touch the patient. They need to be good at putting together the digital information.” (Local center manager 1).
3b2: Municipal home-based care services (HCS) From interviews with both users and health professionals, we learned how the telemedicine invention can contribute to changed use of HCS.
In the first half of the trial period, some centers experienced challenges in identifying users for whom it is possible to reduce the use of HCS. Local center staff and representatives for HCS described that some patients who already had HCS were unwilling to give up these services. Therefore, it was difficult to reduce resource use in HCS in response to the telemedicine follow-up.
“…this far it’s been a service in addition to other services, so it’s not like they have lost anything in a way.” (Local center manager 1).
Subsequently the municipalities shifted their practice when municipal services were allocated to patients. By stating that telemedicine follow-up should be the first municipal HCS to be allocated when a need for HCS is identified, the municipalities hoped to postpone the need for more comprehensive HCS for some of their inhabitants.
In subsequent interviews, local center managers also expressed that it was possible to reduce the use of HCS for more users, partly because of closer cooperation with the home service unit, and thereby better knowledge of the intervention.
3b3: GP responses GPs were divided in their opinions about telemedicine follow-up from the start of the trial. Some embraced the new service and its potential for better follow-up of patients with chronic disease and reduced time use. Others were more reluctant, and feared increased time use, e.g., because of patients demanding extra consultations due to abnormal measurements.
“I would like to have access to measurements and figures, but as you know, we have a lot to deal with, so this means there will be one more service involved. It depends on the number of patients and inquiries that may arise.” (GP 1).
In interviews and workshops, GPs expressed that they were reluctant to change their follow-up of patients until they get acquainted to telemedicine follow-up. Follow-up service nurses reported that GPs’ attitudes towards the service became more positive during the trial period, as the GPs gained experience with the intervention. This suggests that it takes time before GPs change their follow-up of patients who are telemedicine users.
Specialized healthcare The local centers experienced that it was difficult to actively involve specialized healthcare in the trial. In practice, specialized healthcare mainly contributed by identifying and recruiting patients to the trial. This was typically done by a nurse who was paid by the project. Patients were mainly identified during in-patient stays, but some were recruited through out-patient consultations.
Specialist doctors were not significantly involved. In some complex cases, specialist doctors were involved in developing the individual treatment plan. Specialist doctors could not access the patients’ measurements, but patients could bring their computer tablets to the hospital. The general impression from patient interviews was that specialist doctors were generally not interested in the measurements. On the one hand, it raises a potential for closer integration of healthcare services. The lack of interest may, on the other hand, serve as an obstacle for effective integration of services, and for the utilization of the full potential of the telemedicine-based service.
Many patients had regular checkups with a specialist at the hospital, partly regulated by national guidelines. Unless national guidelines are adjusted in accordance with telemedicine implementation, we do not expect the use of out-patient services to change significantly in response to the telemedicine-based service.