Claus Nielsen

Claus survived cancer and daily beats his diabetes with sweat, food and tech. He is an advocate for digital health and care technologies, and has been a thought leader convincing decision makers to embrace change. With an impressive career in Denmark, a happy and tech savvy nation, he has contributed to national and international projects, and helped make Denmark a global leader of digital health and care tech. He was a pioneer in launching mobile solutions back in the 1990s for health and social care, later promoting political awareness and uptake of IoT, robotics & tech services for citizens, patients and older adults. Today he is a digital nomad, working to enable access to affordable mobile healthcare in Thailand and other countries, and developing a platform to ensure that patients can exercise meaningful control over their data.  Claus tweets at @deadpoolNET

I’ve been working with the health system and data for decades. But when my own child developed diabetes – and I was subsequently diagnosed with the disease myself – the dysfunction of the health data ecosystem came into sharper focus than ever. On the one hand, there is a mountain of data. Citizens (those with chronic conditions and those without) are collecting a growing volume of information about their health, their activity, their diet, their shopping habits and more. The trouble is that this data is dispersed through a complex system. Some of it is in your pocket on your phone. Some are housed in government databases and registries. A lot is stored by a handful of big tech companies. And another chunk is sitting in smaller random companies whose app you probably downloaded a couple of years ago. One of the things that really gets me about the scattered distribution of health data is the waste. If patients cannot access this data, interpret it, and apply the insights in their lives, they are missing out on a major driver of behavioural change. In my own life, I have embraced a data-driven approach to improving my own health – almost gamifying the challenge of tackling diabetes and surviving a cancer using sensors and apps. Everyone should have this opportunity. Indeed, given the rising burden of chronic diseases, data is a vital tool in creating a patient-centred, data-driven health system. As I write, I’m wearing a device that can alert me if my risk of stroke rises and another that measures my stress level – imagine the health and financial savings if we could prevent millions of strokes or stress-related incidents every year. But the distribution of health data also raises profound ethical, privacy and security questions. If there is one...