David Kerr, Physician and Endocrinologist, Editor of Diabetes Digest, Researcher, and founder of VoyageMD.com and Excarbs.com has authored this interesting piece in today’s BMJ Blog on the data revolution that’s happening in diabetes care that features some interesting commentary on the low use of Smartphone apps by diabetic Patients.
Here are a few of my thoughts on reading the blog post:
”Diabetes 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?”
I think at play here is a part of the powerful illusion. It’s important that we all recognise that Healthcare services are only very rarely effectively documented. A couple of tweets I noticed recently from a Consultant Endocrinologist highlight for me the way we’re all tolerating working with huge uncertainties not just between Carers and Patients but also between teams of healthcare professionals within even world leading healthcare organisations like the NHS:
Whilst in diabetes care there is an abundance of data that is being captured via expensive and increasingly accurate devices the reality is it’s not being seamlessly and efficiently collected and shared and it’s not being used to drive the supply of personalised actionable information in real-time.
At it’s most basic I think a using data in a meaningful way means your Blood Glucose is X now and you need to do Y. At it’s most complex it’s a single infographic that your endocrinologist can glance at that will help her make sense of your condition and the effectiveness of the plan you’re on ad the diet you’re following. In between those there’s a range of things from apps for carers (so that they know their independently living 98 year old mother or 9 year old son has tested today and is within range or is out of range and taking the right next step) and healthcare workers (eg. so they know in realtime which of their Patients hasn’t been testing and might be presenting at an ER room soon if something can’t be done about it), etc.
”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”
I’m not surprised by this. Generating data and collecting it are too different things. In my opinion it is only once data is being seamlessly collected that have we any hope of using it to effectively drive positive and consistent behaviour change.
“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”
I think once again there’s a common misconception being made here and it’s important that we appreciate the intertwined experiences of Patients who have smartphones as there isn’t a distinction for most between when they use their mobile phone for their life and when they use it for their diabetes care (Read: “Why we’re more likely to drop the “Health” than the “m” in mHealth” to get a better appreciation of this). Sadly it seems that David has simply accepted the headline stat offered by Research2Guidance in their latest attempt to sell a €1,890 mHealth report (it’s quite surprising that a Doctor would place so much weight on Research2Guidance mHealth app findings as this organisation has established a reputation for completely missing the mHealth app opportunity):
It’s key we appreciate that there will always be under reporting if you ask Patients “do you use a specific health condition app?” because like most Patients diabetics don’t just rely on what we might consider to be ‘diabetes apps’ they often use the apps that everyone else is using for functions that are related to their diabetes eg. they browse health information on the web browser of their smartphone, they ask diabetic friends on twitter for restaurant recommendations, they set a reminder on the calendar/alarm on their phone to remind themselves to test their blood in the morning, they download the Facebook app and join a diabetes networking group, they have a screensaver installed that informs others that they’re an insulin dependent diabetic in the event of an emergency, etc, etc.
“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”
Manual data entry is a big design flaw that is preventing diabetes care evolving and seamless data capture is a leap forward. To help you imagine the challenge for an individual Patient consider that a commercial driver in the UK with diabetes might currently be required by law (and to remain properly insured) to test their blood as many as 10 times during a working day (once before they set off to drive and then again for every 2 hours that they drive) and at any time if they are stopped by the police they must be able to produce evidence of their testing. For their driving license renewal they must be able to produce records of their testing to their Doctor. Failing to do this can result in an immediate driving ban (and the loss of their livelihood).
“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”
I think it’s important to realise that this common misconception of App Stores is flawed. App Stores aren’t randomly structured pile-em-high collections. The reality is the Appstores are actively working to actively push the best apps to the top to make them discoverable. There is a reason why Telcare’s app continues to top the Apple AppStore charts, we have never before had such a fair and impartial judgement system in healthcare services. It might not be completely perfect but positive Patient feedback and appreciation of innovation is fuelling discovery by other Patients and driving mHealth App developers to continue to advance and fine tune the services they offer to be successful:
In diabetes care it’s important to appreciate that we’ve never before had such an open Patient feedback fuelled market eg. the world of Patients, Clinicians, Insurers, MedTech/Pharma brands and even mHealth developer competition can all see with a single click that Telcare’s Diabetes Pal app is wildly popular and consistently receiving 5 star ratings from diabetics:
”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”
I think this is simply a business of diabetes problem. It’s not a Patients fault that healthcare systems like the NHS and insurers have decided to financially reward an industry of interoperable cheap devices that you throw away every 6 months and replace with another free device that requires it’s own different set of expensive proprietary test strips that we don’t again reliably collect the data from.
”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”
While it’s conventional for mobile embedded devices to be updateable over the air I can’t think why you might want open access to the programming information running on glucometers or insulin pumps when there’s so much opportunity to innovate in the cloud once we can seamlessly gather the data being captured by these medical devices. I also think it’s unlikely that anyone at the FDA will be particularly supportive of everyone tinkering with the programs that they have tested/approved.
I absolutely agree though that clinicians need to move their focus away from collecting data and move onto working out how they can use information to help Patients take positive action because of it.
”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)”
I think this is a really exciting movement but I’d be surprised if David Kerr is optimistic about the size of this market if he accepts that even though most Smartphone apps are free “only 1.2% of people with diabetes owning a smartphone use diabetes apps on a regular basis”.
What thoughts did the article leave you with?