Managing your own chronic condition: enabling tech to support your condition

Article posted on: 11 March 2016

When I first became unwell, almost 20 years ago, the specialist told me that dialysis and other clinical care should be managed around my life and not my life around the condition. I loved the philosophy and I aspire to that goal. In so doing I'm prepared to risk a paradox with more self-management to liberate the most burdensome aspects.

As we progress deeper into the 21st century, innovations enabling mobile, remote and other aspects of health tech can provide tools to do this. Reducing the patient in the person is ultimately what it comes down to. Less disruption for ourselves, those we are close to, and to our work.

We now enjoy a much greater access to informed sources and an ability share experiences with fellow patients thanks to the internet. Now we have the emergence of wearable sensors and connected devices in the home, giving us a much richer - and frequent - picture of what is going on with our bodies.

More time living, less time as a patient

Helping us to adjust home treatments will help us avoid hospital visits, and when we really need to go (or communicate with the doctor remotely) we can be alerted. This builds confidence for the patient and the doctor, and results in less disruption.

The good news is that we have already seen progress. A the time home, my dialysis machine had zero capability of recording, let alone feeding back data to the doctor's 200km away. An outpatient appointment could only deliver a fraction of information and a lot could change between. Solutions now exist. For diabetics, for example, devices provide much more regular readings, adjustment opportunities, and a record for the clinician to review. And there are connected scales, blood pressure cuffs, thermometers and smart watches.

But there's more to do and I'm inpatient! Thankfully the Dutch Ministry of Health, the European Commission and HIMSS Europe organise the eHealth Week 2016 in June which will no doubt deliver the latest solutions and thinking.

Smart interpretations of trends, warnings, and individual tailoring. And perhaps above all: we need to find a way to improve, dramatically, how the data picture is shared in a coherent, legal and helpful fashion with health providers and patients without multiple siloed data streams - a troubling picture already starting to emerge - overbearing the recipient. Fail on this and the data may not be used safely or to its full potential. Furthermore, training, financing and consent are all part of a complex picture that are ultimately probably harder to sort out than the technology itself, to say nothing of the fact that not everybody wishes to have bits of equipment strapped to their bodies.

Personally speaking, addressing these hurdles is worth the end goal. More time living, less time as a patient.

Twitter: @bonnaud_dowell

William Bonnaud – Dowell
Author: 
William Bonnaud – Dowell, Patient advocate and former European Parliament health policy advisor