[MyData & Open Data] distinctions between personal and open

[Sam Smith]

On 3 Jul 2013, at 01:23, Puneet Kishor <punk.kish at gmail.com> wrote:

> What about my data that *I* collected but *they* helped collect? 
> 
> For example, the fitbit on my hip is owned by me, powered by me, and logs undeniably only information about me. But, the only way I can see that data is through a fitbit owned app  provided to me, the said app uploading that data to fitbit's web site, and that data available to me to download only if I sign up for a premium account. What category would that data be?

What you do with your personal data is up you. If you want to make your data CC-0 etc with a JSON REST API and push notifications, go for it. Generally, people won't do that with their health record and full DNA, but there are reasons for anyone to choose to do so. If it's your copy of your data, it's your choice.

Privacy concerns come from somewhere slightly different. They're not about an individual making choices on their data. They're about someone else's copy of your data, and what they can do with it.

What "they" do with your data should be subject to a very different set of norms, and talked about in a different way. Unfortunately, it is often not.

When HSCIC talks about opening all their data, in a presentation that also talks about pulling your full coded medical history from your GP (google care.data), this stops being abstract problem. What HSCIC mean for open data is the aggregate stats (assuming done properly, generally no problem), but it matters what they say, not just what they mean.

Where did the suggestion of opening the National Pupil Database (tracking kids from preschool to university) come from? It came from a SpAd who heard about the open data agenda, has an economic growth goal, and had an idea...

Oops.

As open data moves away from reference datasets, this problem will go up.

Health will probably be first.



Regards
Sam