[MyData & Open Data] health records in the uk

[Phil Booth]

The abuse of the term Open Data in the official policy is deliberate.

 

It is the perversion of the term propagated by Tim Kelsey, ex-journalist
founder of Dr Foster,  former 'transparency tsar' for the current government
- which is where he started to embed this 'confused use' of the term - now
Director for Patients and Information on the NHS Commissioning Board, which
styles itself NHS England these days. While Kelsey may be smart enough to
use the term Open Data correctly when he refers to aggregate statistics, he
is quite happy to let 'looser' uses of the term persist and spread.

 

As I and others have said to the ODI and in other contexts, the Open Data
community needs to do a lot more to (a) define Open Data in a clear,
understandable and public way, and (b) take ownership of, and proactively
defend the definition.

 

For example, any reference to the release of patient-level health records as
'Open Data' should be met with a swift, forceful refutation (by which I mean
using evidence - not the government version, i.e. denial) and the body
involved should be pursued doggedly until it publishes an official
clarification of its policy on Open Data (or a new policy if it doesn't have
one) and undertakes to educate its own people, update all its information
policies, etc.

 

Unless the Open Data community is willing to do this, it will simply lose
control of the definition - which would be a disaster. We do not want Open
Data to become a mere marketing gimmick, for any Tim, Dick or Sir Humphrey
to slap on his policy to make it seem 'cool' or 'kosher'. 

 

But if no-one steps up to deal with stuff like this, that is exactly what
will happen.

 

Phil Booth

Coordinator, medConfidential

 

 

From: mydata-open-data [mailto:mydata-open-data-bounces at lists.okfn.org] On
Behalf Of Laura James
Sent: 03 March 2014 07:20
To: Javier Ruiz
Cc: mydata-open-data at lists.okfn.org
Subject: Re: [MyData & Open Data] health records in the uk

 

Thanks Javier for sharing! 

 

That's a really confused use of the term "Open Data" - given that as far as
I know, there's been no proposals for individual patient records to be
released as open data in the Open Definition <http://opendefinition.org>
sense.  Clearly lots more work to be done helping folks have shared
understanding of key terms in this area...

 

Laura

 

On 28 February 2014 23:18, Javier Ruiz <javier at openrightsgroup.org> wrote:

Great article by Ben Goldacre

http://www.theguardian.com/commentisfree/2014/feb/28/care-data-is-in-chaos

 

quote on official policy:

 

access to individual patients records can "enable insurance companies to
accurately calculate actuarial risk so as to offer fair premiums to its
[sic] customers. Such outcomes are an important aim of Open Data, an
important government policy initiative. 

 

-- 
Javier Ruiz
 <mailto:javier at openrightsgroup.org> javier at openrightsgroup.org

+44(0)7877 911 412 <tel:%2B44%280%297877%20911%20412> 

@javierruiz

 <http://www.OpenRightsGroup.org> www.OpenRightsGroup.org

 


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