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Who owns the data

Who owns the data?

Over the last 5 years I’ve noticed that there is both conscious and unconscious judgement about what type1 means – from “you shouldn’t eat that”, to finding myself excluded from certain car insurance policies. Increasingly I hear stories from fellow type1’s who just don’t tell people or companies about their condition. Not least because the common outcome results is a negative experience – not a positive one. And ultimately many of us just want to be treated like anyone else – and for us to make the judgement about what we can or can’t eat or what we can or can’t do.

At a recent doctors appointment the nurse came in and announced that I was not looking after myself and that my HBAc1 was rising (ps its 8.5) – Judgement was being levied with no context to the number.. I’d had a nasty virus, I’d been wrestling with settings on my pump and I importantly I knew what had to be done.

With advent of CGM data being stored online, along with pump settings as well as other bio-metric data that often seem to sit along side these portals.. its got me thinking when will this data start being used as a tool to judge me. I’m all cool with it being a tool to help me manage my condition by those who know what they are doing, but what about when this data is used for some other means.

Perhaps its being based in the UK where this country has had its fair share of data leaks, but how secure is this data and do I have any say in how its being used. What if that day comes when the NHS will fund a CGM will they own my data? Last year at a talk in London then MP Jamie Reed said we as T1’s we need to get over it and recognise that the NHS will have access to our live data. Do I really want that to happen? with an organisation that’s grasp on technology is to fax a prescription.

Personally I am largely of the attitude – who cares. But as I looked at a picture of Teresa May the UK’s Prime Minster very likely wearing a Freestyle Libre – I wondered how many newspapers would love to know her estimated HBAc1 from the data uploaded. Could this data be misunderstood and judgement be levied at the highest level as to how fit someone is to hold office.

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Conversely the power behind big data to drive policy is palatable. Diabetes care in this country is driven by finger prick testing before meals, yet as and many others have found out with a CGM – high blood sugars post meals, hypos during the night and potentially (not for me) low blood sugars whilst driving. To have that data on a large scale to show that 4 finger stick tests is not enough would be amazing.

The drive for developing this technology is going at some pace – my thoughts are around, have assumptions been made about who owns the data, do we as type1’s have a say?.

My hope is that the answers would be simple to find.. if I couldn’t find the answers easy or get a straight answer for me it would raise concerns. I’d like to think in the future that judgements will be made about companies on how they manage our data.

So the questions I’m going to ask?

  • Could I find the answers in the online privacy policy?
  • Where is the data stored?
  • Can I as a user ask for my data to be deleted?
  • Who owns the data?
  • Is the data shared – anonymously? identifiable (e.g. with a clinic)?
  • How long is the data stored?
  • Does using the service include conditions on data (e.g. sharing / ownership).

These are the people I’m looking at

  • Medtronic
  • Abbott
  • Dexcom
  • Animas
  • Tidepool
  • Diasend
  • NHS policy
  • Nightscout (yes I’m aware the user creates the account)

Do you think any other questions should be asked?
Who else should I look at?

As soon as I’m happy with the questions I’ll get on with it. ¬†Shouldn’t take to long to get the answers – if it does something is wrong.

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