information management

Are self-styled 'medical' websites a public health risk, asks Michael Cross, and will developments to monitor the information they hold succeed?

The case of Baby L, an eight-week-old brain-damaged baby girl whose parents challenged a hospital's decision to end life-support, grabbed the world's attention - partly because it was unusual, but mainly because it was broadcast on the Internet.

'Baby L died peacefully in her mother's arms at approximately 10.13 Saturday morning New Zealand time. Thank you very much for your thoughts, prayers and words of support.' With these words, the Official Baby L Website closed the case.

Baby L's parents set up the site, complete with video footage, appealing for help from around the world. Although none of the Internet's 70 million users could come up with the hoped-for miracle, the Baby L case illustrates how access to the Internet is changing the balance of power between healthcare organisations and individual patients. Patients can order their own prescriptions on the net (most notoriously the male impotency treatment Viagra), pick up the latest research findings from medical journals, or exchange experiences with fellow-sufferers around the world.

Ahmad Risk, a GP in Surrey and chair of the British Healthcare Internet Society, which has 200 members, sums up the experience: 'All of a sudden you're catapulted into a community of hundreds. There's an incredibly rich exchange of knowledge.' The snag is that on the Internet anyone can wear a white coat: there is no easy way of judging the quality of online data, or the bona fides of anyone offering advice.

The Internet bulges with information on health: an electronic search for 'back pain' turns up more than 300,000 entries. Viagra boasts 41,340 entries. These range from Pfizer's annual report, to promotional material on ginseng, to the locker-room boasts of a 67-year-old man.

Bad Internet advice has already caused tragedies in the US. Following a 1996 case in which a man poisoned himself on oil of wormwood, ordered through the net, the New England Journal of Medicine warned doctors to expect future cases of 'Internet-mediated toxic diseases'. No such epidemic has yet hit the NHS, but it could be only a matter of time.

The new NHS information technology strategy, unveiled in September by health secretary Frank Dobson, promises to deliver high-quality online information for professionals and patients. It calls for the establishment of a national electronic library for health with 'accredited clinical reference material' available for professionals. Among other material, it will have to make instantly available the output of the National Institute for Clinical Excellence and the Commission for Health Improvement, which are being established under The New NHS reforms. While the electronic library will be set up on the NHS's private network, NHSnet, which is isolated from the main Internet, the strategy says there should also be public access. More ambitiously, the strategy also proposes tackling the quality of information available publicly on the Internet.

It says that although the Internet provides an enormous amount of information on health services, 'the main difficulty for the user is to easily locate what they are searching for and to validate the quality or source of information once found'.

The British government's attitude is predictably more cautious than that of its US counterpart (see box). The NHS Executive tends to treat the explosion in publicly available online information as a problem rather than an opportunity. Doctors are also learning to dread the patient who produces a bundle of print-outs at the beginning of a consultation. Part of this suspicion comes from the fact that few clinical professionals in the NHS use the Internet during the course of their work. Nurses and junior doctors already spend 30 per cent of their time chasing information, usually on paper and administrative computers, and have little time for Internet 'browsing'.

For most GPs, the Internet is just too slow and too confusing, says Dr Risk. 'It is not easy to look something up during a seven-minute consultation. GPs will only use the Internet when they don't realise they're connected.'

Part of the problem is that, because of worries about security, NHS administrative computers cannot be directly connected to the Internet, only to the isolated NHSnet. The IT strategy says that the code of connection 'will be reviewed'. A huge amount of official NHS information is already on the open Internet (the best place to start is HSJ's site, www.hsj.co.uk). However, many organisations' sites, set up in a flush of enthusiasm in 1995 or 1996, are showing signs of wear and tear.

Information pages on the world wide web betray their age quickly, because search programs show when they were last updated. One trust has wished visitors to its website a happy Christmas 1997 for most of this year. Technology has the power to end such embarrassments, says Rob Tweed, an IT consultant who specialises in linking large computer systems to the Internet. He predicts a future in which organisations use web-type programs to dip into their mainframe computers, which would automatically mean that websites are up to date.

Such programs can also fish data out of many different systems to create the long sought-after electronic medical record, viewable from anywhere on the network.

One trust developing such a system is Thameside Community Healthcare trust, in Essex. It has installed a browser which allows local GPs to call up information about their patients from the hospital's central systems. IT manager David Lawrence says the trust is considering letting GPs use the system to book appointments directly. A logical step from that is to allow patients to have their own access to NHS computers via the Internet, to check their records or even to book appointments. However, this could pose insurmountable problems for security.

There is another snag to any public health strategy which relies on the Internet: it is still a tool for society's 'haves' rather than 'have nots'.

The IT strategy says that 6.2 million Britons have access to the Internet at home or at work. But these tend to be younger and more affluent than a typical NHS caseload. The 26 per cent of British households with personal computers earn on average two-thirds more than the national average.

Some local authorities are experimenting with public terminals, in libraries or as 'multimedia kiosks' in shopping centres. In future, such schemes can expect to receive central government funding under a pledge to deliver 25 per cent of government services electronically by 2002.

The NHS should be able to exploit such subsidies. However, the Internet as a universal medium will probably await the mass take-off of digital television. This is likely to be about seven years away.

In the meantime, the telephone helpline NHS Direct, due to cover the whole population by 2000, is supposed to fill the gap. When most people want information, they still reach for the phone rather than a computer keyboard.