Published: 13/06/2002, Volume II2, No.5809 Page 19
In a week when the political classes got their collective Y-fronts in a twist over allegedly scandalous e-mails about the Paddington crash survivors, and the data protection implications thereof, I thought to check out what had happened to the snappily titled Health Service (Control of Patient Information) Regulations 2002, last glimpsed in HSJ three weeks ago.
Both medical researchers and civil libertarians have been in a tizz over their conflicting priorities, you may recall, since the Alder Hey organ retention scandal threw traditional procedures into sharp public relief because they proved to be both overcasual and a little paternalistic.
It is not just grieving mums, either. The medical records of celebs with HIV/AIDS are fair game to red-top tabloids. Someone stole the notes on Princess Diana's bulimia problem from a London clinic. No wonder a jittery General Medical Council tightened its guidelines to doctors post-Alder Hey.
But researchers want to go on being able to access individual medical files in the name of clinical audit and wider progress (Britain has a good record here) while the other side wants to uphold the principles of patient confidentiality and consent.
Enter stage left Lord Hunt, junior minister in the Milburn team and an ideal man to bind up wounds and douse the flames of controversy in the upper house.
Strictly speaking, That is not true. The regulations had earlier been debated by MPs, albeit in a committee where what is known as delegated or secondary legislation is shunted off the Commons floor.My sources tell me it was a bun fight in which a handful of Tory MPs disrupted Hazel Blears, the duty minister, for no good reason.
Under the 'modernised' procedures now in place, the full house nonetheless voted the regulations through, 301 to 126, without debate, five days later on May 20.How many of the 427 voters knew what they were voting on? I shudder to think.
Back to the Lords, where none of the above applies. The two-hour debate was a model of lordly lucidity with an ex-minister, the seventh Earl Howe (title created 1821), doing his duty in raising awkward questions. I hate to strike an unprogressive note, but the 51-year-old Howe is the sort of conscientious and moreor-less disinterested peer the old place will miss if T Blair drives out the last 92 hereditaries.
Peers debated the fundamentals during the Health and Social Care Act 2001 and the Lib Dems had been successful in persuading ministers to set up a patient information advisory group (PIAG) to monitor activity.
Now Lord Hunt came back seeking formal powers (initially at least) to access data in only two specific areas, cancer and public health, the latter being a prime example, surely, of where the collective good outweighs the individual rights of an individual with, say, salmonella.The point was easily grasped by Victorian pioneers dealing with cholera.
Nowadays, alarmist media conjure up a picture of Alan Milburn trawling through personal files. Liam Fox's? Pam Warren's? It can't happen. It will only be health professionals or others bound by equivalent duties of confidentiality, Lord Phil assured the peers.
Most of them, including the medicoscience experts, agreed with him. It is not practical to seek consent from people who have moved, let alone died, they said.
So did I, though I was shaken by Earl Howe's revelation that a man he knows was hired as a£5-an-hour temp to process 'sensitive, fully identified patient records', wholly unsupervised by the health authority.
For a reality check I rang Baroness Northover, the Lib Dem behind the PIAG model which the King's Fund drafted.As Lindsay Granshaw she is a prominent historian ofmedicine at the Wellcome Foundation.Calmly, she cited important reports, on radon, cancer and smoking, even on the cancer cluster/electricity pylons scare, where evidence involving known individuals was vital.
In America such work is inhibited by fear of (you guessed) litigation, so Britain's research achievements here are pretty unique. But, she concedes, the NHS is way behind what it could do to anonymise people's names and files.We must await a Nuffield Foundation report, due in November from US researcher William Lowrance, to show the way ahead.