The Sunday media have been trailing a speech by David Cameron tomorrow about giving us online access to our medical records and our kids’ school records, and making anonymised versions of them widely available to researchers, companies and others. Here is coverage in the BBC, the Mail and the Telegraph; there’s also a Cabinet Office paper. The measures are supported by the CEO of Glaxo and opposed by many NGOs.
If the Government is going to “ensure all NHS patients can access their personal GP records online by the end of this Parliament”, they’ll have to compel the thousands of GPs who still keep patient records on their own machines to transfer them to centrally-hosted facilities. The systems are maintained by people who have to please the Secretary of State rather than GPs, and thus become progressively less useful. This won’t just waste doctors’ time but will have real consequences for patient safety and the quality of care.
We’ve seen this repeatedly over the lifetime of NPfIT and its predecessor the NHS IM&T strategy. Officials who can’t develop working systems become envious of systems created by doctors; they wrest control, and the deterioration starts.
It’s astounding that a Conservative prime minister could get the idea that nationalising something is the best way to make it work better. It’s also astonishing that a Government containing Liberals who believe in human rights, the rule of law and privacy should support the centralisation of medical records a mere two years after the Joseph Rowntree Reform Trust, a Liberal charity, produced the Database State report which explained how the centralisation of medical records (and for that matter children’s records) destroys privacy and contravenes human-rights law. The coming debate will no doubt be vigorous and will draw on many aspects of information security, from the dreadful security usability (and safety usability) of centrally-purchased NHS systems, through the real hazards of coerced access by vulnerable patients, to the fact that anonymisation doesn’t really work. There’s much more here. Of course the new centralisation effort will probably fail, just like the last two; health informatics is a hard problem, and even Google gave up. But our privacy should not depend on the government being incompetent at wrongdoing. It should refrain from wrongdoing in the first place.
5 thoughts on “Here we go again”
The truth is that neither David Cameron nor the “Conservative” party is conservative in any meaningful sense. Nor are the Liberal Democrats liberal – and, indeed, they include a high proportion of politicians who don’t trust the people in the slightest (and are therefore not democratic either). All these career politicians tolerate democracy only in the sense of “let the people vote, once every 5 years or so, for one of two more or less identical parties, neither of whom is open about its plans, and both of which will completely ignore their manifestos as soon as they are elected”.
Like it or not, these days we are governed by a self-selected class of managerial politicians, who have no convictions and whose policies are therefore entirely dictated by pragmatism and opportunism.
There is no need ” to compel the thousands of GPs who still keep patient records on their own machines to transfer them to centrally-hosted facilities”. Clinical system suppliers already provide the ability for patients to dial in to their GP system and view their record. What the Government will have to do is persuade the GPs themselves to turn on the facility. They hesitate because of the issue of viewing third party data, and the time they think it will need to answer queries when the patients do see their records.
This was reannounced by Andrew Landsley and Earl Howe at http://www.guardian.co.uk/politics/2011/dec/23/patients-online-access-medical-records. The object of this exercise is to justify transferring your medical records from your GP to the Department of Health. Officials have been trying to do this for years, and patient access is the latest excuse. It’s not a good excuse, as almost no patients used such systems when they were made available as part of the Summary Care Record pilot. See the very thorough evaluation by Prof Trish Greenhalgh of UCL: see
for press coverage,
for the BMJ article and
for the full report. What’s more, there is the potential for real harm, for example via coerced record access by vulnerable patients. Lansley and Howe are being not just negligent but reckless by introducing a technology whose ineffectiveness at improving care has been thoroughly documented and which has the potential for harm. This raises serious questions about the quality of the advice they receive; about the Department’s (lack of) ability to direct and control its IT procurements; and about ministers’ willingness to abide by privacy law, particularly S8 ECHR.
When proposing these sharing data schemes no-one appears to properly address the very real issue of loss of trust relating to data breaches. Data breaches can result in patients being unable to trust health professionals and NHS staff generally especially when it is realised that many health professionals and NHS staff seem to have a very poor understanding of confidentiality and refusal of consent.
The GPES system due shortly will be able to extract data from GP patient records. How many patients will realise this? And will patients be given full and informed opportunities to refuse consent for their personal and health data to be USED for other purposes. When one refuses consent it is clear that he or she is viewed as being difficult. In theory we might have the right to refuse but in my experience one has to be extremely persistent and prepared to be thought of as a very difficult patient in order to refuse consent for anything within the NHS.
Because I do not trust these data systems (I have not consented for my GP records to go anywhere) I will not inform a GP of specific ailments. I go elsewhere for treatment which is confidential.
What will happen next – the Government/NHS taking patients to court for a criminal offence of not giving them health problems so that they can make money out of patients data providing it to Pharmaceutical Companies ?