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David Kerr: Consumerism and the lost tribe in diabetes

19 Dec, 11 | by BMJ Group

David KerrBad news makes good press. Last week the main medical news item was the release of the National Diabetes Audit figures for England and it made grim reading. The audit collected data from 152 Primary Care Trusts covering almost 70% of the population of people living with diabetes. The bottom line was that there are an estimated 24,000 excess (i.e. premature) deaths each year associated with diabetes and many of these are preventable. The news was especially bad for people with type 1 diabetes where the excess risk of an early death was increased 2.6 fold compared to the background population and was even higher for young people with the condition. These mortality data follow on from the more general findings highlighting the fact that achieved levels of blood glucose control have not improved for a number of years and are particularly bad for the lost tribe of young people aged 16-24 years with type 1 diabetes.

Diabetes became a major news item. In response, Anna Morton, NHS Diabetes Director noted recent improvements in NHS services for children with diabetes but then commented that  “adult (diabetes) services need to ensure they learn from these improvements and concentrate on supporting continued blood glucose control, medication, and healthy lifestyles as young people move into adult services. This requires a much more proactive support system from adult diabetes teams across the country.” One glimmer of hope for any beleaguered diabetes centre was her opening statement “NHS Diabetes is making renewed calls for more investment in diabetes care to help prevent the 24,000 avoidable deaths revealed in a new report.”

In contrast, last month a good news story from the NHS did not make such a headline splash. In 1998, NHS Direct was established to provide a free 24 hour health advice and information service, with the aim to reduce the burden of emergency services. Since the summer NHS Direct can be accessed using smart phone apps and the mobile version proved to be an immediate hit—the first week after being launched, the NHS Direct App reached the #1 spot on the free app section of the iTunes store. Now, after only six months, more than one million patients have used the smart phone technology. Ronnette Lucraft, the Chief Operating Officer of NHS Direct, commenting on the success of their app said. “The mobile app is a more discreet and less embarrassing way of seeking health advice for sensitive issues in public or crowded places. This is a significant milestone for NHS Direct and highlights the popularity of accessing healthcare remotely. More people now access NHS Direct’s services online than they do over the phone.”

Locally, in our diabetes specialist centre, technology seems to be very popular – over recent years more than 25,000 people with type 1 diabetes have signed up to an e-learning program and the demand for insulin pump therapy continues unabated. Unfortunately elsewhere access to these types of technology-based approaches to diabetes care remains very dependent on geography and the whim of the local diabetes specialist centre.

Given the recent enthusiasm by the NHS for mobile health apps perhaps there is a need to apply this to type 1 diabetes care? One approach would be to move the clinician-patient interaction into the on-line world allowing people with diabetes to ask questions of a network of informed (?accredited) diabetes experts at a time of their choosing – a more focused version of the NHS Direct app but with the additional feature allowing clinicians to comment on the information in a form of open-access peer review of medical practice – the “consumerisation of healthcare.” This approach has the potential that much of diabetes complication screening could also be handled electronically using “approved” apps for blood pressure and glucose monitoring, neuropathy testing, weight measurement, nutrition advice and also psychological assessment using on-line validated tools. Individuals would also be able to hold their own retinal screening images and be able to arrange appointments and medication prescriptions this way.

A technology-based approach will not replace human-to-human interaction as being a key element of diabetes care but it just might improve engagement with the lost tribe of young people with type 1 diabetes. The reality is that the status quo is not an option.

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. He has received consultancy fees and honorariums for participating in advisory boards for Medtronic, Roche, Lifescan, and Abbott Diabetes Care. He also holds a small amount of stock in CellNovo (a new insulin pump company) and Axon Telehealth.

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  • http://nhsvault.blogspot.com Richard Blogger

    “type 1 diabetes where the excess risk of an early death was increased 2.6 fold compared to the background population”

    Are you suggesting that type 1 diabetes, when well managed, has no effect at all on life expectancy?

    As a type 1 diabetic I would be much more interested in knowing the difference between life expectancy with my current control and life expectancy at the best achievable control for a type 1 diabetic. I am not interested in being compared with people without diabetes since the last (and only) time that was relevant to me was 35 years ago.

    “One approach would be to move the clinician-patient interaction into the
    on-line world allowing people with diabetes to ask questions of a
    network of informed (?accredited) diabetes experts at a time of their
    choosing”

    I am not as optimistic as you. Let's state the obvious: I am the world's expert when it comes to controlling my diabetes, if I am not, then I should be. That is achieved through education, with technology playing a bit part. Admittedly, my expertise comes from the “training” I had at diagnosis when I was 11 and it has been supplemented with a lifetime of seeing what works. (There is an argument that I should periodically have a re-boot – that is, be re-taught how to control my diabetes using the current drugs and monitoring methods.) Assuming that I have current knowledge about how to manage diabetes, what would I get from there being a clinician through an app on a smartphone that I currently don't own but I presume I will have to buy?  I can phone the diabetes care team at my local hospital right now.

    But there is a deeper issue. Ask any type 1 diabetic to be honest and really tell you their blood sugars, and you'll get a different answer than if you ask their doctor. We all do it, whether it comes from wanting to please the doctor, to avoid chastisement or simply out of wishful thinking. Last week I was chatting to the mother of a 22 year old diabetic and I mentioned the telehealth devices that Paul Corrigan had mentioned recently on his blog. This BS monitoring device sends blood sugar results to the patient's clinician over the mobile network at the time they are taken. The woman I was chatting with said “he wouldn't use it”, I replied, “I would, but only after doing a test on my non-networked meter to check that the result was acceptable!” The reason is that there is a difference in the reason for doing the tests I do for myself, and the tests I do for my clinician. The former are so that I can manage my diabetes so that I feel as well as I can (at whatever blood sugar level that achieves that for me); the latter is so that once every three years my clincian agrees to me having a driving licence. (OK, that is flippant, but you get the point.)

    “the demand for insulin pump therapy continues unabated”

    I've never used a pump, and it has never been suggested that I use one. There's no demand from me. However, what would make my life very much easier is not continuous insulin therapy, but continuous blood sugar monitoring. In particular, some way to measure when blood sugar is rising or falling. I can eat and I can inject insulin, but to do that I need to know what my blood sugar is doing.

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