Sorry but I can't entirely agree with the implications of some of your points.
"there is an immensely opaque web of relationships among NHS structures and theirs suppliers / providers, the world of academic and research institutions, the media and the world of charities in their widest acception (I mean including politically supported movements, not for profit organisations and local / national and international lobbies) - all exchanging patients data."
There is really nothing that opaque and the controls that are in place, if followed correctly, are as robust as anywhere. Also, what patient data? Identifiable? Psuedonymised? Anonymised? Living or dead?
The relationships can be made more clear and there is a Freedom of Information Act to support obtaining such information.
The systems are not perfect but having been involved in health information governance since the phrase was properly coined and I can tell you that when patient information exchanged from the NHS the Caldicott Principles, NHS Code of Practices, ICO guidelines and applicable legislation are all followed. There will indeed be slip ups, but anyone that claims a perfect system is lying.
If you want information on specific diseases and conditions take a look the NHS Information Centre Website which provides free tools to analyse certain data sets that may give you this type of information.
I would argue that the NHS is more aware of confidentiality and the need to protect patient data more than almost any other organisation, public or private. It will however, make mistakes. It also is very much on the leading edge of managing confidential information in innovative ways to improve the service it gives and provide meaningful data for use in research. Being on that leading edge means that sometimes the interpretation of guidelines or legislation is found to be inaccurate, but this not malicious or any attempt to be opaque; it is driven by the desire to provide the best NATIONAL Health Service that "meets the needs of everyone", "be free at the point of delivery" and "be based on clinical need, not the ability to pay".
Regardless of whether this is delivered by the Government or by private contractors (increasingly so) we need to cherish what we have and if the use of patient information supports these aims, then maybe that is a small price to pay so long as the information is shared legally and ethically.
My apologies if this comes across a bit forcefully but I am quite passionate about the health service and the governance of its information.
Simon Howarth MSc. MBCS CITP
www.informationedge.co.uk
-----Original Message-----
From: This list is for those interested in Data Protection issues [mailto:[log in to unmask]] On Behalf Of Brunella Longo
Sent: 20 December 2012 17:27
To: [log in to unmask]
Subject: Re: [data-protection] NHS and patient confidentiality
I think this Country has an exceptional reality that does not exist in any other Country in the World (including the highest number of employees for a public organisation, second only to the Republic of China): there is an immensely opaque web of relationships among NHS structures and theirs suppliers / providers, the world of academic and research institutions, the media and the world of charities in their widest acception (I mean including politically supported movements, not for profit organisations and local / national and international lobbies) - all exchanging patients data.
Besides any other consideration, I think that a good way to start being aware that such reality constitutes per se an extremely risky context (not just for patients' privacy but also for... patients treatments, doctors' decision making processes and the overall health of the nation) would be more transparency about these relationships.
So it would be a good think to have published not just data on individual surgeons' performance or on patient mortality statistics, but also for any surgery / GP / hospital or care home, also the number of people affected by UTIs, PIDs or other inflammatory diseases (for instance) after clinical exams and tests, number and names of suppliers for hygienic tools or any other supply, number, sex and age of people affected with cronic diseases that are also on benefits in the correspondent local authority, number of stories published by media and social media, funds received via whatever channel, including collaborations with national and foreign universities and so on and so on.
Confidentiality may be better guaranteed where there is transparency on who is managing what data and why - as most of the abuses happen because they can be easily deceived hiding or misrepresenting the context.
Brunella Longo
Information Management Adviser
http://www.brunellalongo.co.uk
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