Opt-Out or Opt-In

The National Programme for IT is steaming ahead within the NHS (if you believe the press releases), but remains controversial as ever. Pilots in two different areas demonstrate the incredible difference between allowing patients to ‘opt-out’ of the system and ‘opt-in’.

I’m grateful to Ian Brown for pointing out this article:

You’ve Been Uploaded

Private Eye, 1 May 2009 p.28

The government’s NHS database grows apace in its so-called pilot areas, despite its legality being cast in doubt by the European Court and, more recently, the Rowntree Trust… in six pilot areas (aka “early adaptors”), the government has already allowed primary care trusts (PCTs) to upload the so-called summary care records (SCRs) of some 248,000 patients — almost certainly without the knowledge of the vast majority.

At one south Birmingham practice, for example, the records of more than 11,000 patients have been put on the database. Only 38 people were canny enough to opt out. To do so, they have to surmount various hurdles…

When given full information about the database by wary GPs, virtually no one has allowed their records to be transferred. For example, at the Oaklands practice in east Hampshire, not one of the 11,500 patients have asked for their records to be transferred. Dr Neil Bhatia, the so-called Caldicott Guardian charged with data protection in the area, has decided that only those who give their express consent will have a summary care record on the system. Accordingly, no one did.

The difference between the patients in south Birmingham and east Hampshire seems to be obvious. Those unlucky enough to be in the pilot areas are on the system; those with conscientious GPs scandalised by various government data cock-ups are not.

What we witness here is the importance of any decision to opt-out of a database when compared with opting-in. In the absence of any compelling benefits case for the public to be part of NPfIT, they choose not to be. The government is well aware of this problem, and has for some time now set the bar very high indeed for anyone wishing to opt out.

Some two years ago I wrote to my GP asking that my records (and those of my children) be marked with an appropriate Read code to indicate opt-out. He sent me back a copy of the letter from the Health Secretary instructing GPs not to permit patients to opt-out, but instead refer those enquiries directly to the Department for Health. He’d highlighted the relevant paragraph and then written “like hell I will” next to it, together with confirmation that the requested Read code had been set.

GPs recognise the conflict that NPfIT creates with the Hipocratic Oath. Privacy advocates and database experts certainly know the privacy dangers of this scale of centralisation of personal information without consent. Hopefully, the Department for Health will begin to understand these issues before NPfIT goes completely off the rails with all our medical records aboard.

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