Accessing new diabetes technologies: who decides – and how?
An eye-opening presentation about how diabetes technologies are allocated was given at the recent Diabetes UK Professional Conference. Lisa Buckingham reports.
Why does such inequitable access to technologies exist between socioeconomic and ethnic groups in the UK, asked Julia Lawton, Professor of Health and Social Science at the University of Edinburgh, at the beginning of her presentation: Health professionals’ role in deciding who gets access to diabetes technologies: one (big) piece of the jigsaw puzzle.
First, she covered what we already know. Some people don’t want to wear devices; there is a lack of access to information due to digital poverty or language barriers; there’s a postcode lottery due to availability of funding or staff with appropriate training; and healthcare professionals (HCPs) may act as gatekeepers to technology.
It’s that final point that Professor Lawton honed in on for this presentation, exploring the results of two published studies that exposed the views of HCPs as to who should be given access to diabetes technologies (insulin pumps and closed-loop systems). Crucially, she said, HCPs could change their views as a result of seeing individuals who they might not have considered to be good candidates for technology, using and benefiting from these devices in ways they had not anticipated.
The REPOSE study
The first piece of research she examined was the REPOSE study, which interviewed HCPs who had delivered the Related Effectiveness of Pumps over MDI and Structured Education (REPOSE) trial. That trial had set out to determine whether insulin pumps provide added benefit compared to optimised multiple daily injection (MDI) therapy in adults with type 1 diabetes who received high-quality structured education.
In the qualitative study, the researchers explored which kinds of individuals healthcare staff (diabetes nurses and dietitian) thought would gain the most clinical benefit from using a pump and why. It is worth noting that while there was a good representation of high/low socioeconomic groups in the trial, there was a low representation of black and minority ethnic groups.
They found that staff consistently held the view that insulin pumps offer people opportunities to achieve better blood glucose control than MDI regimens. However, they also felt that people need to be willing to use the pump’s advanced features or it just becomes another method of injecting. They also felt that pumps require more skill and effort than a MDI regimen because of these advanced features.
Importantly, the staff noted that they had also used tacit/informal criteria alongside formal guidance from the UK’s National Institute for Health and Care Excellence (NICE) when recommending individuals for CSII in routine clinical care. These criteria were based around the staff’s judgment about the personal/psychological capabilities of individuals. ‘Poor’ candidates, even when they met clinical criteria for a pump, included those who are ‘troublesome’, those who’d always shown poor compliance, older people, those who are not technologically literate and those who might expect the pump to do all the work for them.
‘Good’ candidates were more technically able and more educationally able to take information on board, demonstrating a potential unconscious bias towards middle-class, educated individuals.
In light of this, what’s interesting is that the REPOSE trial allocated CSII with a randomisation process rather than staff judgment, so staff were exposed to individuals using CSII who they would not have recommended in routine clinical care.
As a result, staff observed that it forced them to ‘take their blinkers off’ and open their minds. They witnessed people doing extremely well on pump therapy who they would have predicted to struggle. Elderly people and those with low educational attainment did much better than anticipated.
This forced staff to question the criteria they had previously used to predict potential success by observing that some educated and technologically able individuals did not always use their pumps very effectively.
Staff also felt that it was no longer appropriate to use people’s previous motivation or compliance as a predictor of success. One staff member observed that pump therapy can act as a tipping point into engagement with diabetes self-management as it boosts confidence.
The conclusion from the staff was that all people who meet clinical criteria should be given the opportunity to use insulin pumps. “How are we ever going to know unless we give them all a chance?” said one.
The CLOuD study
The second piece of research Professor Lawton highlighted related to the CLOuD study. This was a UK-based multi-centre RCT exploring the benefits of a day and night, hybrid closed-loop system – as compared to an MDI regimen – in individuals aged 10-16 years who were newly diagnosed with type 1 diabetes (this was done before such systems were licensed for use in the UK). Again, they interviewed staff who delivered it and the representation of socioeconomic and black and minority ethnic groups among the trial participants was the same as the study above. Professor Lawton pointed out that this is a problem across diabetes trials in general and needs addressing.
Even though no clinical guidelines for this technology existed at the time of the trial, staff still had strong pre-existing views about who should be prioritised. They felt that while a closed-loop system is less work, it still requires work and is not a ‘fit-and-forget’ system. Input and support from family is needed.
Pre-trial assumptions included: close knit families with co-habiting parents would use the system most effectively, along with those who are highly educated with a good understanding of technology; people with low educational attainment would struggle. This, again, shows a potential (unconscious) bias towards middle-class, educated people.
As with the previous study, they found that staff had these notions challenged during the trial. For example, some well-educated individuals over-interacted with the technology with a detrimental impact on blood glucose control. Conversely, less educated individuals did better because they let the system get on with doing its job. They also found that unmotivated families became more engaged as a result of using the technology.
Staff concluded that you can’t judge how well a person is going to do using the usual factors of motivation, intelligence etc and that potential recipients should not be filtered out on the basis of their own judgment.
Professor Lawton’s conclusions were:
- It needs to be acknowledged that HCPs are trying to make the best use of scarce and expensive resources, and there is a genuine will to make the best use of these resources
- HCPs can and do hold prejudicial and erroneous views about the kinds of individuals who would most benefit from using diabetes technologies
- This means that guidelines alone, such as those from NICE, won’t ensure equitable access as staff use informal as well as formal criteria when allocating scarce resources
There are no easy or quick solutions, said Professor Lawton, but something has to be done. HCPs should be encouraged to consider and reflect upon any unconscious biases they may have and be given support to overcome these, and we need to acknowledge that such (unconscious) biases exist in the first place. It may be useful to use training videos presenting examples of individuals who do not conform to HCP’s assumptions about candidacy.
For more on technology and diabetes, enrol on the following EASD e-Learning courses:
For more on this topic you can also take a look at the following content on Horizons:
- ‘Do novel diabetes technologies really lighten the load?’ – Professors Moshe Philip and Tadej Battelino’s contribution to our ongoing series The long and the short of it
Any opinions expressed in this article are the responsibility of the EASD e-Learning Programme Director, Dr Eleanor D Kennedy.