Data Sharing Review

[Peter Fairbrother]

Sorry for the half-double post, sticky keyboard.

Michael Simpson wrote:
> On 7/12/08, Mary Hawking <maryhawking@tigers.demon.co.uk> wrote:
>> The report on data sharing commissioned from Dr Mark Walport (Welcome Trust)
>> and Richard Thomas has been published: hardly surprisingly - seeing the
>> interests of one of the authors - it is very keen to allow researchers full
>> access to medical records - and seems to think that these will be held on a
>> central database for the whole of England. I don't think there is the full
>> support for making medical records available for research among the medical
>> profession that is claimed.
>>
> 
> As a medic with an interest in developing an electronic patient
> register i would be unhappy with the concept of any data sharing
> without the specific consent of the patient being given *every* time
> that their data is to be accessed by anyone.

While that's an almost hippy-ish goal, it's not strictly necessary - 
there are times when giving out patient data simply isn't intrusive.

Though the present "data mob", if I may coin a phrase, have no clue when 
that is - admittedly the line isn't easy to draw, but it's not in the 
same universe as what they propose.

So it may be necessary after all.

> 
> The state seems to have real problems with the idea of accountability
> and without clear mechanisms in place to implement *all* of the 3As
> and a demonstration of what they actually mean then it would be my
> view that any current proposals are flawed.

What's the 3A's?

> 
> cf recent House of Lords ruling on FOI attempt to access info on
> leukaemia clusters + all 999 call data from Scotland being lost in
> transit without any real reason for sending live data to a third party
> by post in the first place.
> 
> Mike Simpson
> Medical Officer - Glasgow Addiction Service

I'd not let the soche send me for that job!

-- Peter Fairbrother

> also not one of the "medical mob"
> 
>