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 thing, we have been learning together over the past years it’s that data is powerful – and that it can be misused. Personal information is being used for commercial, political and criminal purposes outside our control. It will only continue and increase.
As unpleasant as this realisation is, at least it has taught us a key lesson I’ve been preaching for years: data has value. It will, I believe, become a kind of currency to be protected and traded. As this idea spreads, citizens and some regulators are waking up to the big question of ownership.
Who owns all the bits and bytes of your health data dotted around the world? The answer should be obvious: you do.
The challenge is how to put patients in control of their data in a way they can access it and act on it. That’s what the Data for Good Foundation is all about. I’ve spent the past five years working with the Foundation together with the founder and a lot of other visionary changemakers, on a pro bono basis, all working for the same aim, and that is to bring users back into the equation.
The solution was to come up with a Foundation structure with the ability to do business. It was established in 2018 to promote knowledge, dissemination and use of data-based development, health, prevention and disease management. The overall ambitious aim is to significantly contribute to the development and growth of public health locally, nationally and globally.
Our analysis is that such an entity that can represent the individual is the missing link in the health data ecosystem or marketplace. There is a huge need for an honest ethical data broker, between citizens and the private and public actors that hold their data. It must become possible for citizens to share their data in confidence with a party they trust. All the value we create goes back to the purpose of the Foundation and, ultimately, to the owners of the data.
We are approaching a critical point in this project, building the first use cases for cancer, diabetes and mental diseases. I will be at the MedTech Forum in Paris to raise awareness and hopefully find partners to join our efforts. As we can’t raise money like a traditional company, we need support from industry via CSR funds or other means like research funding to help accelerate this ground-breaking initiative.
Data has value. We must secure it, share it, and unlock its full potential. And then we must use it for good.
This blog is part of the MedTech Forum blog series. Claus Nielsen will be speaking at the MedTech Forum. You can follow the conversation under #MTF2019 and find more details at medtechforum.eu.