Re: [projectvrm] My Consent, My Control, My Data: Knight Foundation Proposal

[Mark Lizar < >]

HI Adrian, 

Thank you for your support.  HIE of One is a great effort and leading the way in regards to personal health data and its control by the Master Controller who owns the data. 

There is a massive fight over medical data in the UK right now "(medConfidential) are in a live fight right now over the confidential medical information (GP records) of every man, woman and child in England. Our goal is to make every flow of data into, across and out of the NHS and care system consensual, safe and transparent - of the 3 of those, consent is by far the most tricky. “ 

Control of our data is a critical issue right now. Consent need not be a tricky issue.  But it is a critical issue right now, especially in terms of health data and big data.    There are many organisation and government that are trying very hard to erode the need for consent so they can continue to get around it and profit from it. People are being privatised. 

(great paper from the  Ontario Privacy Commissioner on the topic attached called 'Privacy Paternalism' - Thanks Jon W).  

The battle for control of our data is incredibly important and it is getting critical. 

Let me know if our Open Notice effort can be of use to you Adrian, we would be happy to help. 

Kind Regards,

Mark 

Attachment: pbd-privacy_paternalism.pdf
Description: Adobe PDF document

On 19 Mar 2014, at 17:02, Adrian Gropper < "> > wrote:

Hi Everyone,

I just applauded this proposal.

On a related vein, please check out HIE of One as a healthcare-specific proxy for interaction with the services giving you Open Notice that operate access portals/ APIs. I'm also working with Kantara from the User Managed Access (UMA) perspective. Some of you web-standards junkies might be interested in the workshop on March 28 at MIT http://kit.mit.edu/events/mit-kit-workshop-private-health-data

In any case, please visit and applaud https://www.newschallenge.org/challenge/2014/submissions/hie-of-one

Thanks,

Adrian

On Wed, Mar 19, 2014 at 12:13 PM, Info SS < " target="_blank"> > wrote:

Hi Everyone, 

We (the Open Notice Initiative) just launched our first public pitch for funding and support called  "My Consent, My Control,  My Data”.  Finally this serves as an explanation about what we are working on over in Open Notice and Kantara. 

This is also a good segway in to the Small Data to Control Big Data discussion we are looking to champion in the coming months. 

For those of you interested in the topic and up for supporting this noble effort for personal data control please take a look

Here is a link to the proposal. 

https://www.newschallenge.org/challenge/2014/submissions/open-notice-consent-receipts-by-open-notice-initiative-and-ciswg-of-kantara-ieee-isto

It just takes a second to view and to applaud it.   

Kind Regards, 

Mark Lizar

http://opennotice.org

--
Adrian Gropper MD