Event report: Your Protection versus your Privacy

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Yesterday, I didn’t know that all your paper records as held by hospitals right now is owned by the hospital, not you. Fascinating…..

This example was used to highlight one benefit of the migration to digital records as described by one of the speaker of the event I attended yesterday, a panel discussion on ‘your Protection versus your Privacy’.  After all the negative press that has circulated around ‘privacy’ and ‘breaches’ in recent times, it was a refreshing change to exciting possibilities that come with move to digital platforms. The key message was all around empowerment of the individual to make strong, independent choices.

It was also refreshing (coming from a technology background, personally) to hear the recognition that until 20 years ago, a range of businesses did not have a business model to exist, however the invention of the digital advertising business enabled the possibility. Netscape was the pioneer in this field (for those not online in the 90’s, Netscape Navigator was the web browser that jump-started it all: the first usable commercial web browser for accessing websites on a computer with images and text). This piece is key in recognising that much of the financial gains in the past 20 years wouldn’t have happened without the creation of this economy. An interesting question I like to ponder: would we have gotten the equivalent of Google Map if it were not for Google having the ad-based revenue to work with? My theory here is that we likely would have gotten an equivalent service eventually, however it may have taken decades longer: the level of investment and commitment would have deterred all.


However, as always, the talk discussed both the positives and the challenges. Just because the enablement of the digital ad economy enabled all these successful businesses, doesn’t mean that should just have to hand over our data to give them an ‘out’. In the same manner that just plastic one-use disposable straws going the way of the Dodo, two of the speakers were optimistic that the targeted ads business may just disappear in time as both sides – individuals and the marketers – realise how creepy it is! We’ve all had the experience of being followed online: making a purchase in store, or researching a purchase and then seeing ads for the same product for weeks after (even if ironically, we actually purchased the product – just showing how dumb the products are). That is a nice thought to consider, that an evolution in business models means this sort of deep advertising may disappear, no?

The topic of health records and related topic of health is a fascinating one. I could only laugh at the quote “We build systems like the Wright brothers built airplanes — build the whole thing, push it off the cliff, let it crash, and start over again” (it turns out this was from a NATO conference in 1968). Thankfully, we’ve learned, for the most part, how to build big systems! However, when it comes to the topic of Privacy, we are still only learning. At present, the discussion is always based around ‘something versus your privacy’. As emphasised, this is a false dichotomy that should not be portrayed this way! The topic as a whole would be well served to not be portrayed as a battle, as it is not about defeating progress or creating obstacles.

On the topic of healthcare, much of the discussion revolved around including the correct representatives. At present, many of the deep discussions are taking place without one of the key stakeholders: the patients. A recent example was an event on the topic of ‘unlocking patient data’ – there was only corporations and hospitals represented. It’s an unfortunate fact that at present, patients are only involved when something goes wrong. There is a very topical item around the use of data also: recent examples of the NHS supplying a significant amount of anonymised data to insurance companies. While allowed, and a planned event for Ireland also, people should be made aware of this. 


The dark horse as always is around genomics. A relatively early field, I believe this is the equivalent of the early days of the Internet. As famously described in this David Bowie interview from 1999, at one point no-one could imagine more than one telephone per town. We’ve come a long way from that to the point where every person has a device, let alone any house. The same occurred for the Internet, so while it’s hard to imagine everyone having detailed genomics information that is easily accessible, why should it be no different? In addition, DNA brings additional complications: supply your DNA and not only have you given up your own private information (that is unchangeable, unlike a password), you have also given up your entire family and relatives! This is an unknown field and area we are moving into……

Further reading on DNA: “Don’t buy online DNA ancestry tests. You are the real product” and “One Of The Biggest At-Home DNA Testing Companies Is Working With The FBI

Finishing off, an interesting talk to start the year. And as always, I’ve direct notes if anyone would like a copy - comments below, or hit me up through the contact page!

Lastly, an interesting quote that was made during the talk. Do you agree?

“almost every area of technical progress today is reliant on ever broader access to personal information.”