The Shadowed Utopia of Big Data in Health Care

There are many of us that collect and monitor various aspects of our health, for example fitness, weight, sleep, mood, diet etc, sometimes for interest but often to achieve a specific health goal.

A lot of the devices and apps we use to collect this information are increasingly automated and minimally intrusive.

The big challenge is getting all this data in one place to analyse and see trends, as most of the apps don’t talk to each other and there is not yet an effective ‘common platform’.

Anyway here is a video summary of the blog, or keep scrolling!

So imagine the health utopia we can create, if we fast forward a few years, where all of our health profile data is stored on a common platform.

  • Biosensors will be able to collect and store virtually all of our important health and lifestyle data, without us noticing.  Our ECG, breathing, eating, metabolism, blood chemistry, mood and physical activity data will be transmitted and stored into our online health profile
  • Our medical records and personal data, such as family history, susceptibility to diseases, genetic profiles, allergies  etc. will be uploaded into our health profile
  • We will get personalised recommendations on how to maintain optimum physical and mental health.  Take a walk, a glass of water, medicine, a fruit juice, holiday etc. We will also get entire personalised wellness programs that can be made fun by competing against ‘similar’ individuals
  • Millions of other peoples anonymised data can be uploaded.  We can compare the lives of others who have similar genetic make up and the effects their lifestyle has on them, therefore helping optimise our own

This utopia comes from the combination of our collective health data.  Current studies are often flawed by assuming that we are all the same.  In this ‘new-world’ we can compare ourselves with similar people, having confidence the predictions are accurate.

For example, maybe for your genetic profile, you have a higher than average susceptibility to a specific type of cancer.  But a specific diet or supplements can reduce this  significantly.

And it won’t be about making us all ‘health-nuts’.  On the flip side it might tell you to ‘live a little’, enjoy fatty and salty food, maybe even drink and smoke (with of course a degree of moderation) as your personal risk from lifestyle diseases is particularly low.

It sounds a great world to me, we can relax and not obsess about our health, yet we get valuable personal insights and recommendations.  We can chose to ignore them but at least it is an informed choice.

There is a major but, There is no such this as a free platform.  Facebook is the obvious example where we lose control and ownership of our data.  Do we sell our digital health data down the river to get access to this utopian health platform?

There has been recent UK media coverage about the potential trade off we make with our personal data and how current regulations are struggling to keep pace.

There are some key principles that should apply in the use and sharing of our health data, now and in the future:-

  • You should be able to opt in and opt out at anytime (withdrawing your data like money from a bank account)
  • The sharing of your data should not harm you, for example being denied health or life insurance as a result of using the platform
  • Sharing the data must benefit you.  Only the most philanthropic would actively share their data, knowing it would help society generally but they would get zero return from it
  • Efforts must be made that your identity remains anonymous despite the challenges in doing this in a big data world
  • The approach should be inclusive, i.e. all have access to the system and we should not create a ‘digital underclass’  Actually if we allow significant sectors of the population to miss out we also miss a big opportunity with that data

Enforcing this in the new world will not be easy, however the custodians of our data must be held accountable via strong regulations, if any harm comes to us.  These would be regulations ‘with teeth’, heavy fines and even criminal prosecutions if assesments are done poorly and safeguards not implemented correctly.  Current data protection rules are inadequate in the world of #bigdata.

I find this new world and the direction it is going very exciting, many others understandably do not, mostly for the reasons above.  I normally find the subjects of regulations and compliance rather tedious, however it is essential to get this right, to take hold of a great individual and group wellness opportunity and to prevent our individual and group data violation.

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