Sample description
Twenty-seven people with T2D were eligible to enter the study, and data saturation was reached after 21 interviews. One person expressed an interest in the study but chose not to proceed because they did not feel comfortable with the University standard procedure of data storage. The sample was diverse in terms of age (median 60 years, range 29-74), gender (11 men), socioeconomic situation and household income. Two thirds had a University degree or equivalent and 17 participants identified as White British. The sample overview is in Table 1 and the individual participant profile in in Table 2 in the Appendix.
The sample was self-selecting for those who had tried using digital technology to support the management of their condition. However, not all people in the sample were technophiles. Participants ranged from those who used one intervention to those who used multiple digital interventions (up to 7), and in one case the participant had tried digital interventions but had stopped using them because she did not find them helpful (ID 24). Twelve participants were light users (≤2 intervention) and nine were heavier users (>2 interventions) of digital technology (Table 1).
Digital interventions used
Digital health interventions used included: Blood Glucose Monitors (BGMs) with apps, wearable technology (e.g. Fitbits), online access to electronic health records, diabetic specific and general health websites and apps. Most people did not use interventions designed specifically for people with diabetes, but rather used technology designed to support healthy living and social connectivity. Wearable fitness trackers were the most commonly used intervention (16 participants) and apps that tracked nutrition or fitness (11 participants). The diabetes specific interventions were the BGMs (Dario meter, Freestyle Libre, Trueyou mini) used by ten participants (five supplied by HCPs and five purchased privately), and three different apps each used by one participant (Diabetes diary, IBG star app and Habits- South Asian specific diabetes app).
How people learned about digital interventions
Few participants described learning about digital interventions from HCPs, and most felt that HCPs had limited knowledge of technology that could support their diabetes self-care. They talked about educating HCPs who “don’t get the technology” (ID 10, white female, Low Ed) about what is available to the public and their benefits. Only one person mentioned that the Food Smart app had been recommended to them the “first [NHS] health visit that [he] had from this wellbeing thing”(ID 22, white male, Low Ed).
Instead, participants described learning about digital interventions that might support their self-management through searching the internet, social networks, support groups and online communities and forums. Participants talked about how they ‘googled’ interventions, navigated apps stores and products and sought out expert advice. Many participants initially found out about technology through friends and family. Participants took advice on digital interventions from those whose opinions they trusted and valued, because they were friends, were perceived to have higher status, or because they appeared to have professional knowledge. One man described how he learnt about the Change for Life app through “very knowledgeable” people in the diabetes research focus group he attends:
…they have a much more in-depth, er, understanding of things. And they present more problems, and ask more questions, and say things that we wouldn’t dream of saying. (ID 28, White male, Low Ed)
Group membership influenced the type of technology people heard about. Participants who were involved in community-based diabetes support groups and diabetes research groups described finding out about technology themselves from magazine articles, talks and conferences and hearing about them from other group members. They also had ‘professionals’ representing digital health companies like Abbott attend their meetings. Online communities and forums fulfilled a similar purpose to physical support groups in spreading information about innovations in technology.
I’m sort of active in the diabetes online world (…) there are always people there talking about new innovations.(ID 33, white female, High Ed)
How people acquire technology
In context with health services
Many participants believed that limited resources in the NHS prevented them from accessing technology to support their diabetes self-care. This came across particularly strongly in the context of BGMs. Some participants described being provided BGMs while others described how the NHS “refused to give [them] a meter” (ID 27, white male, Low Ed). Those who were not supplied monitors felt that the NHS was limiting availability of BGMs to people with T2D because of budgetary restraints or perceived need.
it’s disgraceful really that these technologies, the quite basic technologies, are so blinking expensive that people feel they have to be cut. You know, things that help people self-manage. Because as soon (…) you get better educated and self-managed things improve, but, you know, we live in a time when that doesn’t count really. (ID 37, white female, High Ed)
Some participants privately bought BGM and additional test strips because they were not supplied by their HCP or because they felt that the equipment provided was not adequate for their needs.
I belong to a forum called, Diabetes.co.uk. Erm, and, erm, I learnt most of what I know about diabetes on there. Erm, and, there were people talking about how to fund your own blood glucose testing by using cheap meters and whatever. And pay for them privately rather than have a prescription. And I’d done that. (ID 41, white, female, High Ed)
They supply me with, erm, one box of 50, erm, a month (…) I do buy my own strips as well, erm, because I’m very conscious that, sometimes you have to test – or I, I have, I test – when perhaps it’s not absolutely necessary, but I need to know where I am. (ID 42, white male, High Ed)
Participants described having negative reactions from HCPs about their use of BGMs when they had bought one for themselves, rather than being supplied or prescribed one on the NHS. One woman talked about being frustrated with the critical response from her doctor about Freestyle Libre, who was critical because “it doesn’t meet with any approval in this neck of the woods.” (ID 41, white female, High Ed). One participant described not being provided with a BGM because the nurse felt having access to a BGM may mean he ended up “in an even deeper hole” with his health-related anxiety (ID 27, white male, Low Ed). However, other technology (such as digital dietary and activity aids) used to support self-care behaviours appeared to elicit more positive reactions: "I showed them [Diabetes Diary app] to a doctor (…) he thought it was an excellent idea” (ID 20, white male, Low Ed).
Barriers and facilitators to access
The main reported barriers to privately accessing Digital Health Technology (DHT) were cost and technical proficiency. However, some participants described how they were able to draw on social resources to overcome these barriers.
The cost of DHT was prohibitive for some participants. Participants described how they had considered buying expensive technology like the Freestyle Libre, but the high cost meant it was “a no-go” (ID 40, white female, low income). One woman talked about how Fitbits had become less affordable “This one was £60, that’s the cheapest. Now they’ve gone up to about £90 I think” (ID 10, white female, low income). Some used expensive technology (such as the Freestyle Libre) but limited its use to minimise expense, only using it “when things were going to be changing” (ID 42, white male). Others described using DHT that were free to download onto their smartphones.
Participants described how access to DHT was facilitated by people in their personal networks. They talked about having access to technology such as smartphones and watches through being given “a very generous gift” (ID 41, white female, highest income) and through perks from work such as company phones that are free to use. One participant described how her personal trainer got her to use an app (MyFitnessPal) to keep a track of what she was eating to “really understand the diabetes more” (ID 37, white female, High Ed, low income).
Group membership provided benefits which included access to digital technologies. Those who were members of diabetes support groups talked about receiving discounts off expensive digital interventions and being offered free samples.
people within the group have availed themselves of it [Freestyle Libre], because we did get some, erm, free vouchers from the rep, and these were distributed within the group. (ID 42, white male, High Ed)
Some people self-identified as early adopters and technophiles, while other people felt less able to navigate new innovations but were still using DHTs. There was a suggestion that limitations in the individual’s knowledge of and skill to use technology could be overcome by support from people in their social network; where people with technology knowledge and skills could act as tech buddies to help the participants overcome issues with usability.
now I couldn’t load it, and luckily I’ve got a daughter and a wife who is sort of techie, you know. I’m a bit of a technophobe… (ID 10, White Female, Low Ed)
What we say to our support group members is, those who are not so smart, for phone, kind of geeks, just go and tell you family members to help you. (ID 26, Asian British-Indian Male, Low Ed)
Social capital seemed to help some participants be able to gain better access to technology. A man talked about how his work as “a Microsoft partner” meant he was able to negotiate getting replacement technology when his failed because he felt confident with technology companies (ID 36, Male, 57yrs, White, High Ed, lowest income). Another man used his role as lead of a South Asian diabetes support group to gain pre-launch access to a culturally sensitive app for himself: “it hadn’t reached the iPhone yet. (…) I said to the company [making the app], “Well let’s, erm, you’re going to launch it, let’s pilot it within our groups, to see… The effectiveness, to see how, what people think.” (ID 26, Asian British-Indian male, Low Ed and income)
Why people select and use technology
Participants were motivated to use DHT because they provided self-care support, a feeling of control over T2D, and personalised advice or feedback. The selection of technology was also guided by participants’ preferences and what they valued in relation to technology and self-care support, and these in turn were influenced by age and gender.
Participants described how DHTs gave them a sense of being in control of their condition by providing self-care support and feedback. They talked about how BGMs kept them on “the straight and narrow” with the diabetic diet by providing personalised feedback, meaning “you have nowhere to hide from that evidence” of how food impacts blood glucose levels. (ID 33, white female, High Ed). Others talked about how the feedback from wearables like Fitbits had “driven” them to increase their activity levels and “change my lifestyle as a result of trying to get that 7000 steps.” (ID 27, white male, Low Ed) Access to BGMs was particularly important to the participants because many felt that this technology gave them greater control over their blood glucose levels or diabetes in general.
without those two things [blood glucose meter and Freestyle Libre], I wouldn’t be in control of my blood glucose. (…) my HbA1c, would be up in the, in the, erm, diabetic range. There’s no way I could keep this level of control (ID 41, white female, High Ed, highest income)
Digital interventions were valued by many participants because they felt that the personalised information provided was more beneficial than “one fits all” (ID 27) guidelines issued by HCPs and in structured education courses. Participants talked about turning to digital interventions and forums because they offered tailoring to different culturally specific needs, personal diet preferences and learning styles that were not catered for in community-based education courses and leaflets from HCPs they had experienced.
“I thought, “Wow this is something I’ve been looking for, for a while” [Habits South Asian specific diabetes app] And it’s now here, so we have to take advantage (ID 26, Asian British-Indian male, Low Ed)
when I was diagnosed diabetic, I wasn’t offered a course and I didn’t push for it. Because I have, I had heard feedback from other people on the forum who had gone on said course…and found it absolutely useless, because it just pushed carbs. (ID 41, white female, High Ed)
how appropriate that style or level of learning is for any of those people [in the DESMOND course], never mind all of them, it’s gonna be suboptimal because (…) people aren’t gonna get the same things out of it. Some will get m-much more than others…(ID 33, white female, High Ed)
Some participants felt that physical and digital interventions were complementary, fulfilling different roles in relation to education and practical support.
whatever you get from a sort of structured education programme (…) I think those can only be the principles and brushstrokes(...) what you get from the self-stuff is, like, colouring it in, getting, getting the detail. (ID 33, white female, High Ed)
There was a perception from some participants that technology could not replace current effective non-digital interventions. A few of the interviewees talked about the benefits of a physical courses over a digital intervention, including having someone to “show people how” to do an activity (ID 26, Asian British-Indian male). One man felt the physical prompts he used for taking medication in pill form (e.g. medicine dosset boxes) could not be easily replaced by technology, but found apps helpful for tracking his intake of insulin where no physical prompts were available.
it’s [apps] of no benefit if you are just taking medicine, because it doesn’t record…the way you take your metformin because the dosset box you can see when they have popped (…) So, so taking insulin was a driver to get an app that would thoroughly keep a record of when I had two, or done something… (ID 20, white male, 74yrs)
There were mixed preferences with regard to digital forums for social support. Several participants described receiving all the support they needed from online forums.
I’ve made quite a few friends on there [Diabetes.co.uk], erm, and we, we interact separately from the forum. (ID 41, white female, 50yrs, High Ed)
Other participants talked about how people would miss out emotional support and learning from other people with diabetes, which they felt “an app doesn’t replicate” (ID 29, white male, 64yrs). A few were very negative about sharing their experiences and seeking support on digital social platforms.
the idea of sort of going onto, er, onto a sort of social website, to say that, you know, “I’m feeling great today, or not sort of great today”. And then waiting for somebody else, to comment on it, that, that’s, that seems just pretty futile, and narcissistic. (ID 29, white male, 64yrs, High Ed)
Technology was described by many of the (older) participants as something that young people use and older people resist: “I don’t think it’s any point trying to tell an 85-year-old about Fitbits. But someone who’s sort of, has an understanding, try it, see if it works for you.” (ID 27, white male, 58yrs). For some participants, differences in use of technology between older and younger people had been observed as well as perceived. There was the view that younger people had a better understanding of technology and some of the digital interventions were better suited to the way younger people interact with technology such as “chat, er, forums and things like that” (ID 37, white female, 68yrs).
In contrast the two younger participants in the sample (female aged 29 and male aged 31 years old) talked about the benefits of physical interventions over digital. The younger man felt that non-digital interventions increased his opportunities to make social connections and used the discussion of health apps as a conversation starter with people at the gym:
I would like to do a course [Man vs Fat], and that would sort of encourage me to meet other people, but also, to (…) share ideas, on what works for them, and what’s been quite useful (ID 23, Asian British-Indian male, 31yrs, High Ed, lowest income)
The younger woman felt apps were not very good compared to in-person courses like LEAP and Weightwatchers “Cause the whole point is you got to be physical” (ID 24). She was the only participant that felt none of the digital interventions she had tried had been helpful for the management of diabetes. She characterised digital interventions as being for people who were already “independent in their own exercise” (ID 24). She did express the feeling that she had different requirements than others on the diabetes support course because they were much older, but she found the quick progress she made relative to the older attendees motivating:
I found it [LEAP] really good but I was like the youngest one there. So everyone else was like, quite sedentary. And I found it really easy to lose weight and, erm, and they all just like, hmm. (ID 24, Asian British-Indian female, 29yrs, High Ed, low income)
Male and female participants emphasised different concerns about technology. Many of the men in the group had concerns about data security and with what companies were doing with their personal details or whether “nasty people” (ID 36) could hack and used their data maliciously. Male participants also talked about some technology feeling insidious, “like you are being watched” (ID 22, white male, Low Ed). Some of the female participants spoke about challenges with establishing which online sites were credible sources of information but did not bring up issues about security.