There are few things more frustrating to genuine progress than when the cynics and nay-sayers are proven right.

If you’ve had multiple conversations with people about genetic test kits from 23andMe.com, Ancestry.com or the like, then I’m sure you’ve heard people be sceptical about why anyone would hand over their genetic material — and $100 fee — to a private company who will simply tell them what they already knew… you’re 12.5% Irish.

The objections I’ve heard range from being privacy related (the lack of governance in a private company you have no control over or visibility into) to being…

I hate being ripped off. It’s not actually the quantum of the over-charging or even the theft that bothers me. It’s the very fact that something that I was supposed to have control over was affected without my involvement or awareness. That applies to phone chargers stolen from your desk, hidden bank fees and charges that you discover only after you’ve paid for them, identity theft, and pretty much everything in between.

I’m not alone in this. We all have an innate sense of justice that we’re usually only aware of when we hear of injustice — when our internal…

Clinical data has been used for decades, and we’ve all benefited from it. Data is plentiful, and data is powerful. That makes data plenty powerful — that’s great news. Having worked in data analytics for years, I can attest the general observation is that the more detail you have in the data, the more insight you could gain from it.

That’s all well and good, but the flip side of that coin is that when it comes to health data, individual people are involved. Thereby, detailed granular health data translates to very sensitive, very personal information about very real people…

My Health Record. It is big news. It is a bold step that has taken the effort of a lot of people and the intention is a good one — to provide Australians with their own health record, because an engaged patient is a healthier one.

My Health Record, or MHR as it is commonly called, has been around in various incarnations for a few years now. The uptake while it was in opt-in mode was pretty low, and it is now moving to an opt-out model. This week marked the beginning of the opt-out period, where Australians will automatically…

In my previous post, I touched on a single but very serious risk that could bring the future of data-driven insights to its knees — unconsented data. We have more data than we are able to process at the moment and the rate of data generation is only increasing, so it is very easy for data to be used without anyone noticing — especially because data is used en masse. Very rarely is someone looking at your individual record for the purpose of analysis. Still, when data is found to have been used unethically, the reaction can be larger than…

Here’s an understatement: Your data is out there. Actually, it’s everywhere. You are generating volumes of data — usually without realising it — and unlike the unheard loner clapping in the forest, the waves you are creating are not only heard, but are being recorded …then analysed and sold to a company that re-analyses it in order to make products that lonely clappers are more likely to buy before heading out into the woods.

Meanwhile, we’re clapping away thinking that no one is listening. It may seem a little dramatic, but it has been happening for a while and we…

Axonium

An information-rich platform where users access and benefit from their ethically sourced health data in a decentralized, secure and trusted environment.

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