Original URL: https://www.theregister.co.uk/2010/10/22/nhs_patient_rights_consultations_released/

NHS: Big tech might be OK for patient power

'No decision about me, without me'. Unless I'm unhinged

By Jane Fae

Posted in Policy, 22nd October 2010 11:33 GMT

The Department of Health has released its consultations on patient rights and the future of IT. Does this mean no more security fails, privacy breaches and wastage ahead?

The consultations are well-intentioned and on the right track, but according to one-time contender for the Tory leadership, MP David Davis, the NHS track record on security and patient privacy could lead to embarrassment further down the road.

The consultations, issued on Monday, implicitly challenge those who objected to big tech projects in the Health Service, with the proposition that used intelligently, information can be a force for good. The second consultation has some strong statements on patients' right to control access to their medical information.

Davis spoke to El Reg earlier this week. While he said he welcomed the moves to empower patients and give them greater access to information, he expressed concern about bureaucratic creep. He said:

"There is a risk that the proposals suggested for direct access to GPs via email is more fashionable than sensible."

Davis continued: "It is hard to see any significant benefit arising from putting all doctors onto public email, but it is easy to see significant costs, added bureaucracy and serious scope for either distraction and error because of the sheer volume of unnecessary emails that doctors are likely to receive."

However, possibly more significant than any of the changes proposed is this statement from Secretary of State for Health Andrew Lansley, in which he states: "The first principle of the White Paper [on patient choice] is that the NHS should ensure that for patients 'no decision about me, without me' is the invariable practice."

This will be music to the ears of advocacy groups up and down the UK, which have long been at odds with a service that they perceive as supporting the idea of consultants handing down edicts, as opposed to listening and learning.

The first of these consultations - Liberating the NHS: Greater choice and control - makes the strong claim that "without the right information, support and infrastructure being in place, the vision of informed, empowered patients making choices over the things that matter to them is unlikely to be achieved."

Behind this objective sits a focus on new technology such as "Choose and Book", personal health budgets and most radical of all, the idea that in future patients will take charge of their medical records online, gaining the ability to log, track their treatment and even make choices about the care they will receive.

Underpinning all of the above is the second consultation document - Liberating the NHS: An Information Revolution - which is clearly intended as a keystone to future NHS IT strategy.

It talks of "transforming the way information is collected, analysed and used by the NHS", and central to this new approach is moving "away from information belonging to the system, to information enabling patients and service users to be in clear control of their care". That clearly aligns with the objective of patient choice.

The paper also suggests that in future, the DoH will be "ensuring the use of the NHS Number as the unique identifier". This is alongside the stated objectives of "improving data quality" and "improving the recording of key parts of the record", which sounds very like the summary record by another name.

The NHS spine project is dead - long live the spine!

Reaction so far has been muted. An official NHS blog site highlights a great deal of suspicion on the part of those likely to be involved in the changes that this is just window-dressing, and not real change. It cites Rich Watts, who notes "patients will be in charge of making decisions about their care" yet the talk throughout the rest of the paper is of "empowering health professionals".

However, Watts says, although the interests of health professionals and patients are aligned in theory, this is not always the case in practice.

The patient choice scheme also revives concerns, expressed last year, that the motivation for this move had as much to do with Conservative links to US providers of software for the job - such as Google and Microsoft - as to any great concern for patient welfare.

Davis said: "It remains essential that these consultations scrutinise the security and privacy aspects of the individual patients' information.

"The NHS has a history of security failures, including information being lost, misused or accessed without permission.

"It is vital that any moves to improve the convenience of access to information, such as putting patients' records online, are balanced by a proper care and attention to prevent the sort of disastrous failures to protect individual privacy which has been too often characteristic of government IT."

Both consultations close on 14 January 2011 - so if readers wish to make their views known, they should start writing now. ®