David Kerr: Data and diabetes – a not-so-quiet revolution

David KerrDiabetes teams do not usually perform operations or procedures, and cure is rare indeed, but what they do have in abundance are data. The collection, reporting, and review of data are embedded within the clinical experience of everyone living with the condition and their healthcare providers, and in the UK, diabetes data are converted into hard currency in primary care. However, the challenge remains as to what to do with data in terms of using them in a meaningful way to provide clinical benefit for individuals as opposed to populations?
Over recent years there has been a dramatic rise in the number of medical devices for people with diabetes that generate data, including glucose monitoring and insulin delivery systems, and also consumer products that offer advice about carbohydrate and calorie content of meals and the impact of exercise on the ability to achieve optimum control of blood glucose levels. Unfortunately evidence from UK national audits and elsewhere has shown that the overall achieved level of glucose control for people with type 1 diabetes continues to be suboptimal, so there seems to be a disconnect between the availability of technologies for diabetes care and the impact they have.

One technology, in particular, that still has to live up to expectations is the application for so called smart mobile phones—popularly referred to as “apps.”  Although there are already more than 1000 diabetes related apps available from the Apple store and on Android, and most are free or for sale at a modest price, only 1.2% of people with diabetes owning a smartphone use diabetes apps on a regular basis. So why have apps for diabetes still not become more main stream? In reality most of the currently available apps are not particularly appealing and are not reimbursed by payers. Most simply re-present data which have had to be entered manually by the user in the first place. Another important barrier to widespread uptake is a lack of evidence of effectiveness—invariably no clinical trials have been undertaken before the app is launched. There is often also a failure by the app developers to understand, let alone incorporate, behaviour change techniques (including “gamification”), which will encourage long term use of the app. The analogy is the exercise bicycle, which most people have purchased at some stage but which, within a short period, of time eventually ends up in an attic or garage never again to see the light of day.

The other barrier to effective use of data in diabetes care is that devices (meters, glucose sensors, pumps, and pens) do not talk to each other, and users are dependent on bespoke software to allow a download of their personal data from a single device—a lack of interoperability, to use the jargon. The obvious solution would be to persuade manufacturers to allow open access to the programming information running their devices, to make this freely available in a secure cloud for everyone to use, and to bring the disparate data onto one platform with improved quality of the way data are presented—the user interface. In the US, people with type 1 diabetes have decided that they are not waiting for the industry and regulators to change and are already pushing for open source, open access data from multiple devices to be made available to support new app development and when the artificial pancreas becomes mainstream (find out more).

For clinicians involved in diabetes care these revolutionary changes will require a degree of lateral thinking in terms of assessing the personal data needs of individuals—how much, when, as well as what kind of data are needed and for how long? The challenge will be to encourage people with diabetes to make the necessary changes based on their personal data. Hopefully, more people will make the right decision and benefit, but as clinicians we will still need to allow people to make the wrong decisions from time to time providing they have the capacity to understand the data available to them.


David Kerr wears many hats, sometimes at the same time—diabetologist, editor of Diabetes Digest, researcher, and founder of VoyageMD.com, a free service for travellers with diabetes and Excarbs.com focusing on exercise and insulin. You can follow him on Twitter (@GoDiabetesMD) and Linkedin.