Table 7 Summary of patients’ and providers’ experiences and expectations of sharing patient-gathered data during consultations
Groups | Codes | Summary | Example quotations |
|---|---|---|---|
Participants with T1D | Experiences | • Without data, feedback is too generic • With data, discussion is more practical | “[Without data], often I feel like the meetings I have with them, it’s like – “how do you feel” and [I say] “I feel its fine”. I don’t get that much out of [the consultation]” (T1D_P2). “[I get] specific tips with things [the doctor] extracts through the data which I don’t feel like I saw myself. I’ve gotten advice that works” (T1D_P2). |
Expectations | • More specific feedback based on own-gathered data • Interoperability will limited HCPs in their ability to interpret data | “[Healthcare providers could] Interpret data with the knowledge they have and then give specific tips and feedback about the data” (T1D_P2) “Maybe [HCPs] can help me more if they see that there’s a reoccurring problem … if I’m high during the evening...we can try to talk more specifically” (T1D_P3). “The [insulin] pump has all this data, so when I come to the nurse she puts the pump into the computer then she runs through and program and sees everything, and … it doesn’t turn into much … with having a lot of data … [its] because of the tools [the HCPs] use” (T1D_P3). | |
Specialists | Experiences | • Not all patients use, or want to use, these technologies • Some patients do not use the technology as HCPs would like • Those who understand the potential benefit of the technology use it correctly • CGMs and pumps are the most common technologies seen, few apps | “They can come with all sorts of data, because it’s automatic. But they haven’t made a diary or sort of explained why was it like this, why did I get a hypoglycaemia … saying “oh these are my measurements” and “ohh no, I haven’t looked at them” then it’s so useless” (Specialist2). “They check a lot of blood glucose and they actually write it down for me because they realize that when they come with their small booklet then we can talk about it together and see” (Specialist1). “When we are talking about new technology, it’s mainly based on CGM. Because that’s the new technology the past 10 years” (Specialist1). |
Expectations | • Patients will pre-digest data before consultations, then present it to HCPs • Patients who use mHealth are adept enough to use it correctly • Too difficult to understand all of the diverse health technologies | “Patient X comes in and she has her measured blood glucose … on her device, whether it’s a telephone or not. You get it on the doctor’s screen … and then you see if it’s high in mornings and so on, and you see how much insulin you use. You have the patient already before the consultation – trusting in her responsibility and her interest in doing better” (Specialist1). “[Use of mHealth] requires some technological insight and of course some intelligence in a way or - you understand me - stamina” (Specialist2) “Less than 50%” of their patients bring their own data to the consultations, either written in a book or via an app...[and] I don’t know how many of my patients would like to use the Diabetes Diary app - maybe 5–10% - because it’s too much!” (Specialist2). | |
Participants with T2D | Experiences | Frustration with GPs not being able to answer specific diabetes questions | “GPs are busy with work, so … it would be better to get an appointment at the hospital with a diabetes nurse, maybe once a year, and discussed your case with your data. And if you are way off with your values, you could also discuss with a doctor and then come to a conclusion” (T2D_P1) |
Expectations | Perceives that the GP wants patients to come to consultations with an agenda/questions and corresponding data | “I think what doctor expects is that you bring your blood glucose measurements, at least from the last week [with] notes about diet, physical activity, [if I] ate too much or drank too much. Compare my own measurements” (T2D_P2). “As I see it with the GP, you go to them when you have a specific problem. If you have [an annual check-up] with diabetes, [you are not going because of] a specific problem” (T2D_P3). | |
GPs | Experiences | • Without specific questions or data, the consultation discussion is “boring” • Wishes for the patient to explain their situation in more detail | “I think it is a bit boring. “This doesn’t look pretty good, go home and be better”. We need to know how you have been doing, what has happened. That’s what’s going to start a discussion” (GP2). |
Expectations | • That the patient-gathered data must be easy to understand, will save time and result in specific and realistic goals for patients • Patients and providers will discuss data together | “[It is possible] if the patient comes with [PGD] and it is easy to understand” (GP2) “[Patients need to] understand how to get there. To say getting HbA1c down by doing X. Very specific. In that case, say “you won’t have blood glucose under that and that, and you will walk 5000 steps each day”. Specific feasible goals from day to day” (GP2). “What happened to that resulted in these data? What has happened here? Good and bad. Why is it like this?” they could “make a plan to reach a goal - make a decision together … because it is the patient who has to go through with it and follow it up, regardless of what we write... it has to be feasible” (GP3). “I think you go through data in together. Look at it together, both and points and trends, both hard data and stories … specific information will save us time, instead of trying to make people tell us” (GP1). |