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It’s time for medtechs to liberate my data

medtechs should liberate my health data

I was recently shocked to hear just how far patients and carers are having to go, simply to access their own health data from their medical devices for the commonest conditions. Surely it’s time for an end to this inexcusable barrier to patient and carer involvement in managing health?

As part of their ‘Click’ series the BBC ran an article last week on the efforts of one family to achieve what their medical device provider couldn’t – access the all-important data flowing out of a continuous glucose meter. It featured Rachel Graham, the mother of a young type 1 diabetic daughter called Isobel. They had paid privately for a continuous glucose meter, which isn’t routinely reimbursed, because they felt that this was the best overall solution to the never-ending challenge of getting the blood sugar equation right. However, if the mother was away from her daughter (eg to make a living, like normal people do) she couldn’t see how things were going. She simply had no means of remote access to the data coming out of the CGM, even though her daughter was more than happy for her to see it.

What was shocking that this mother has had to resort to hacking the CGM, via the Nightscout open-source project (strapline ‘#WeAreNotWaiting’). I must say the end results were impressive with web access to your readings anywhere and a neat hook-up with the Pebble smartwatch for important alerts.

If I was the mother of a diabetic child, or the son of a forgetful diabetic parent, of course I’d want to know that their blood sugar was being tested and controlled – and I better be able to do that from wherever I am in the world. Now, I’ve never been a fan of hacking, for all sorts of reasons, but in this case it seemed like a moral imperative. Why in this day and age should this be necessary? We know that technology isn’t a barrier – all sorts of machines are communicating already. Even in the medical device world equipment like implantable defibrillators and pacemakers have been routinely uploading data for years – but only to cardiologists, and there’s the rub.

It seems that there’s an in-built assumption here between clinicians and device makers that patients are too stupid to understand the data coming out of their own devices.

Well listen up:

  • If I’ve got one of these serious conditions I guarantee I am going to research that condition very thoroughly and do my best to understand how I’m coping
  • And in any case it’s MY DATA! It comes out of my body and the bottom line is that I own it, no one else

It was somewhat re-assuring to hear that the CGM maker in the article is now offering a patient portal (but only in the US for now) and I know that there are options coming available for connected BGMs too now. But the bottom line is it’s long overdue and it’s time for the medical device industry to embrace the modern age. If they don’t, someone else will. It was also encouraging to hear that the leading diabetes research organisation JDRF were backing the BLIP hub development, to encourage easier access and interchange of data from devices.

So all you medtechs out there what are you doing? And if you’re a patient or a carer how do you feel – are you getting the help you need? Please let me know or contact me here.

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