Privacy, Sharing and Social Media

Good article on the evolution of privacy with social media.

http://www.nytimes.com/2010/05/09/fashion/09privacy.html

This ties into a lecture I went to last night on eHealth Records by Prof. Peter Croll. There were themes about privacy vs the utility of the information stored in the system for providing health services. There was also a discussion of the various layers of control and who would have control over the information.
Generally I would break it down into a number of different groups of topics.

* Functionality. - What information the system can hold and how it can be delivered.
* Control - who can add, edit, see, delete and under what conditions.
* Ownership - At the end of the day, who gets to say what happens to the information, Who has access to the information or derived information ( de-identified information and summary information etc)
* Peace-Of-Mind - This captures trust, perception of safety, perception of accuracy, sense of security etc not the actual reality of these things.
* Oversight - Who is the magical "third party" that will enforce all the rules and policies and how with this third party evolve over time?

Now getting back to the whole social media spin. So much of the issues with privacy and sense of control are already being played out in the social media systems. I think the developers of an eHealth system could do well to look at the issues and some of the solutions that have already been tried and solved. But since the Gov. is funding the show, we all know it will turn into a large slow fragile system that is of marginal use and great cost and will be scrapped in a few years once people have taken the next step and relaxed a bit.  Then the next system can be implemented on the bones of the old one.  Its evolution but painful to watch.

The worst part of these evolutionary systems is just how little seems to be learned by the corporate IT who do the development. They seem to want to re-invent every single wheel and learn every single bad lesson for themselves again and again and again.... but I digress.

These systems are essentially made up of people connected by a thin layer of technology. It will need to be flexible with lots of layers of control.

Another of the big issues with a system like this is its future use. I know the value of a large data set, so does every other data architect. I can bet that somewhere someone is in the ear of the designers about trying to make sure the data is permanent. No matter what the users see, the data record cannot be deleted. Ethically there are issues here, functionally there are probably other issues, and technically it just makes the job a little bit harder. From the perception point of view it would probably solve some of the difficulties but all that will go for nothing when someone finally figures out that they don't really have the level of control they thought they had.
The question is whether the owners of the data set (I can only assume the Gov. will claim it) will be willing to accept termite-ing of the data set over time or not. Likely? I think not.

It will be fun to watch....