Table 3 User perspective: quotes from the stakeholders

Care plan

– “As far as diabetes is concerned, this is a very old plan. Therefore, I have been going through a series of check-ups for many years.”

–“At a certain point I promised my endocrinologist I would always co-operate whenever my help was required, in trials or anything, that I would be available… I’m here in Osakidetza to do what’s necessary.”

– “A person…who is a good patient (…). He/she would let us do anything.”

– “She is aware and helps us as much as she can.”

– “In particular, follow-up, control of acute exacerbations as well as monitoring several chronic illnesses; and anything that may come up in acute illnesses”. “And also, above all, I try to educate them in health issues related to chronic diseases”

– “What we do is care for patients with a fragility level of 4 to 5 because we believe they can benefit the most from this specific home care.”

– “Normally care on demand, vaccination campaigns… The nursing department does nursing check-ups and then provides home care assistance.”

Impact

The question was only addressed to the professionals

The question was only addressed to the professionals

– “The first part of the study included very specific health education lessons which had to be delivered every week, picking up the thread, and that was the hardest.”

– “It had a positive impact on my work and the rest of the team’s work.”

– “…we have got used to working in a way, which, in my view, is correct, improving the prevention and promotion instead of only providing care at the critical times...”

– “When we screened the list of patients that they had sent us, we had to review it, and it increased the workload”

– “Well, I actually collaborated in patient selection and in the follow-up of any decompensation or problems; but the person in charge of their education was the nurse, during the check-ups.”

– “What were the differences in comparison to the path we had used before? Well, I believe two main things had been lacking: one is nursing and the other proactivity.”

Changes

– “Since the last time, when I had a build-up of fluid approximately last February or March, I have changed my diet since then and adapted it to what I do now, and all those things.”

– “Maybe more assistance… I recorded everything I did every month and handed it to them, and that was certainly another follow-up”

– “As you know more things, you see things you didn’t notice before.”

– “The nurse calls me when she finds it convenient or when she/he looks at the report or whatever, and she/he usually calls me”.

– “Attention at the health center was..., there haven’t actually been any changes, (…) excellent from the start.”

– “We still have a lot to do…we are learning to coordinate, working on it; however, we all still have to remember that there is someone else on the other side who works like me in another field and needs to know what I think and what I’m going to do.”

– “They are used to us looking after them and making decisions …we can try to teach them the warning signs…rather than basic daily control, that none of them have had before.”

– “What I noticed is that the health professionals used to act in acute situations, without prevention or promotion.”

– “Over the last year or two, we have developed a much closer contact with specialist care and, in particular, with internal medicine.”

– “I believe that they are more responsible, yes, they know the warning symptoms and do not wait to start feeling fatigued before coming to see us.”

Care coordination

– “Let me put it like this, since its implementation, since everyone I deal with from Osakidetza can access the central PC data, it has improved”.

– “At least you have coordination (…), you are not helpless.”

– “…I have noticed that the healthcare professionals used to react to an acute process without prevention or promotion and this program, (...) this way of working…has helped them to move towards the first phase.”

– “Over the last year or two, we have had a much closer relationship with specialist care and, in particular, with internal medicine.”

Expectations- Satisfaction

– “I felt confidence and an unknown quantity which was, will it work or not? And was confident I would do it, just in case it works.”

– “No, our expectations were not for him to improve but to help others improve.”

– “…Better supported, you think, well, I can call and ask because there are people there.”

– “That’s what I wanted, to see the benefits of follow-up and the prevention, promotion, patient’s empowerment at the primary care level, so they can experience it the way I do.”

– “And if the study were going to be more important and more international, it would add more validity to the one we have had”.

– “Another expectation: will this really improve the patient quality of life and avoid admissions?”

Deployment of the program

– “As soon as people become aware of the severity of their situation, have a little follow-up and see they are being listened to, it’s highly positive.”

– “I believe we should all be involved to improve the entire generation, not just ourselves.”

– “The problem for the professionals is that we don’t know what each of us does.”

– “Increase the patient’s empowerment, not when the illness is so advanced that despite all the empowerment that we want to give them, they already need all resources available, but earlier.”

– “More home visits, more patient education, more listening to the person to identify his/her needs and using new technologies; these are all required.”

– “For a professional, everything new generates an expectation, let’s see what happens...what this is going to entail over time, see what this means to us because our main problem is time”.

– “I don’t believe we need more resources for this, I think we have to get organized first, which is what we’re trying to do.”

Use of the ICT

– “If I want to, I can have it via the Internet (…) Yes, but I actually don’t want to, if I have my doctors working on that.”

– “I’m not exactly an IT expert, but for those things, I keep a piece of paper and take it everywhere; then I do my own translation.”

– “The problem is we’re dealing with very elderly patients. As that’s a handicap, we need to find support among the carers.”

– “That’s why, for me, starting these programs with young people is essential because in the long-term, by the time patients are 60, they will have already covered all that journey.”

– “If my patients have access to contact through the health files and each time they write to me, they will book an appointment in my diary and have time allocated to them; I could do it perfectly, and that would greatly help everyone.”

– “For professionals, it promotes sharing knowledge, cooperation, networking.”