Data Sharing Review

[Adrian Midgley]

-----BEGIN PGP SIGNED MESSAGE-----
Hash: SHA1

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.


There are two definite problems there:-

1.  that when the patient is present they will almost always have some
agenda, and substituting gaining consent to look at their records for
their opening remarks is bad.


2.  It makes work when the patient is not there difficult - unless the
consent is assumed to or explicitly extends on from when it was last
given ...  This would render reviews of medicines and results and
referrals difficult and taken to its extreme require a new solution to
repeat prescriptions.



I favour an absolute rule of all reading of the patient's notes being
reported to them, quarterly or  monthly or by access to a web site at
their will - whatever is suitable.  Like a phone bill or credit card.

Each report should say who accessed what, what right they asserted, what
purpose they declare and what they accessed.

Given (existing or required) logging of access this becomes a sizeable
but not difficult task.

- --
A
-----BEGIN PGP SIGNATURE-----
Version: GnuPG v1.4.9 (GNU/Linux)
Comment: Using GnuPG with Mozilla - http://enigmail.mozdev.org

iEYEARECAAYFAkh9tvcACgkQb80am9d/StdE0QCfYxIAZyfX8iLFHaznRwWhSAeg
UT8AoL11/H0395ipZUf38hOuYH9/1gcy
=iXxK
-----END PGP SIGNATURE-----