WRITTEN ON November 1st, 2006 BY William Heath AND STORED IN Uncategorized

Here’s a glimpse down the path of wholesale loss of trust in e-enabled public services, and the ultimate social failure of an expensive and technically & managerially extremely difficult undertaking. FromThe Guardian today:

Call for boycott of medical database accessible by up to 250,000 NHS
staff

Millions of personal medical records are to be uploaded regardless of
patients’ wishes to a central national database from where information
can be made available to police and security services, the Guardian has
learned.

Details of mental illnesses, abortions, pregnancy, HIV status, drug-
taking, or alcoholism may also be included, and there are no laws to
prevent DNA profiles being added. The uploading is planned under
Whitehall’s bedevilled £12bn scheme to computerise the entire health
service….Although data protection laws supposedly ban unnecessary build-ups of
computer information, patients will get no right to choose whether their
history is put on the Spine. Once uploading has taken place, a
government PR blitz will follow. This will be said to bring about
“implied consent” to let others see the data. Those objecting will be
told that their medical care could suffer.

The government claims that computerised “sealed envelopes” will allow
patients selectively to protect sensitive parts of their uploaded
history from being widely accessed. But no such software is yet in
existence. It is being promised for an unspecified date. Some doctors
say “sealed envelopes” may be too complex to be workable. The design
also allows NHS staff to “break the seal” under some circumstances.
Police will be able to seek data, including on grounds of national
security. Government agencies can get at records, according to the
health department, if “the interests of the general public are thought
to be of greater importance than your confidentiality”. Examples given
of such cases include “serious crime and national security”.

This is a big problem, and I really cant see that it’s Richard Granger’s fault, much as people bruised by his needlessly abrasive style would like to bring him down.

The Wibbies: Wouldn’t it be better if customers were involved before huge programmes intended to help them were started?

Wibbi they were in a formal sense DESIGNED for the people they are INTENDED to help?

Wibbi government stopped using Tony’s sofa as the final forum for making major, high-risk programme decisions that depend on huge IT deployment? Nothing against the sofa, but it’s not fit for this purpose.

Wibbi Gateway reviews tested for formal customer involvement at each stage of a customer-facing change programme – conception, design, decision, progress monitoring, review and feedback?

Wibbi the RESPECT agenda was a matter of human dignity and acknowledging the personal sphere of people’s lives, and not trying to prevent vulgar behaviour such as boozing and gambling (which seem to be the only contexts in which the government supports any form of liberty)?

Wibbi we took a serious interest in good privacy principles (eg PRIME) and privacy-enhancing technologies?

Wibbi if programmes that are huge were not also complex an vice versa?

Givem the vast differences in our personal circumstances and health needs, Wibbi our vision for e-enabled healthcare was of personal control with our GP over the information and resources required rather than remote bureaucratic administration?

Wibbi if we ran the country? No, it wouldn’t, and it’s a dreadful idea. All we’re asking is that those playing the only game in town (with our hard-earned tax) listen respectfully to critical friends and to those they’re intending to help.