9When will NHS digital dreams become a reality for patients?

In the last 16 years the web revolution has drastically altered the way millions of people work, shop and spend their leisure time. But has the effect been so profound on the health sector? And is the NHS keeping up with patients' demand for more information?

The seeds of change have been sown. The Department of Health has launched the NHS Choices website, which gives patients clinical and service information to help with decisions on where to have treatment or which GP to register with.

And the much-maligned national IT programme is expected to give patients online access to their medical records through the 'HealthSpace' website, the NHS equivalent of online banking.

Yet how much scope is there for the internet to have as big an impact on the NHS as it has on, say, the music industry?

Indoctrinated

Picker Institute Europe chief executive Angela Coulter says there is a huge demand for information but for now it is 'largely unmet and what there is does not gear itself to the demands of the patient'.

This is a shame, she says, as research shows access to good-quality information and educational resources can be highly beneficial.

Dr Paul Cundy, British Medical Association spokesman on computing in general practice, agrees. He says the internet means patients tend to research conditions but come to the surgery with an open mind about the GP's diagnosis.

'It enhances the doctor-patient relationship for the patient to be part of the information-gathering process,' he says.

But University College London.e-health unit director Dr Elizabeth Murray says those indoctrinated into the wonders of the web can take it too much at face value. 'People who use the internet to self-diagnose may run into trouble,' she says.

Dr Cundy endorses the popular perception that those who look up information online tend to be more affluent and well educated, raising the spectre of the 'digital divide', another unwelcome barrier in the war on health inequalities.

Put simply, not all people have access to computers at home or work, and if they do may lack the skills to access web information.

This is particularly true for older people. An Age Concern survey in May 2006 found that, despite the media chatter about silver surfers, 44 per cent of over-50s had no access to a computer.

As this age group is more likely to have chronic conditions or need elective surgery two of the key areas where the internet gives patients additional information then the net's reach is going to be limited.

In contrast, the under-40s are avid users of the internet and text messaging and probably wonder why the NHS does not do more to make the most of them.

More than three out of five UK adults now use the internet. According to internet research firm comScore, those aged 15-24 are 25 per cent more likely to be internet users than the general population and spend 24 per cent more time online. In contrast, over-55s make up 34 per cent of the population but only 18 per cent of users and spend less time online.

Security concerns about patient details may also seem outdated to a generation used to online shopping and banking. And those used to checking travel delays in real time on the net may wonder why the NHS cannot provide information about waiting times in minor injury and walk-in centres. There is certainly a hunger for information, if not from a wide enough section of society.

But is the internet good enough to meet the needs of patients? Ms Coulter is sceptical. She says information on sites such as NHS Choices and NHS Direct online tends be 'didactic, rather old-fashioned and paternalistic' rather than recognising patients' roles in making decisions about their healthcare.

A Picker Institute study found that patients need directing to relevant information as it is hard to find with a search engine or a badly organised NHS website.

The new Choices website 'does not answer the questions that patients want to ask it answers the questions that the service thinks patients ought to want to ask', says Patients Association head of special projects Vanessa Bourne.

'You have to get into the mindset of a patient given a diagnosis - they will grab at anything. It is vital they have a site that is trusted and talks in the right tone,' Ms Bourne adds.

Much of its clinical information is too simplistic and patients are likely to know it already, she says.

She is also critical of many trust websites lacking the information patients really need, such as how much car parking costs and what coins the meters take.

Unproven cures

Ms Coulter says the DoH was slow to realise that a policy that emphasises choice needs to put information at its very core.

'It was really only a year ago that the DoH started to do anything serious,' she says. 'I welcome the NHS Choices website but it has a long way to go. I'm a bit anxious it is being done in such a rush that they are not learning from research on what does and does not work. Just indiscriminately bunging on a lot of stuff does not help anyone.'

And concentrating on choice between hospitals may ignore other choices different treatments, for example, or the choice between having treatment and doing nothing.

It is widely believed the website was set up quickly, in about three months, although the developers behind it say it will evolve over time.

But for now the DoH legacy of not paying due attention to the potential of the internet is still visible information on services was transferred directly from its predecessor, www.nhs.uk.

As HSJ revealed last week this meant an estimated third of GP names and half the opening hours are wrong.

Competition has been the NHS mantra during the last 10 years and no greater lever is pushing the need for the right presentation and information than the plethora of competing sites on the web. For dementia alone, Google throws up a staggering 15.3m links. And use the world's most popular search engine to look for any chronic condition and within a page or two you will find some unproven cures often promoted by those with a product to sell or unconfirmed personal accounts.

As Google uses page traffic in determining the order in which sites are displayed, commonly used sites tend to come up first fortunately these do tend to be the most important and therefore more accurate.

But Dr Murray argues that issues around accuracy of information are not new. Before the internet existed, patients got information from a variety of sources, some reliable, some less so. Generally, most people are fairly sensible in weighing up information, she suggests.

And Dr Cundy says his patients are good at weeding out obviously cranky websites. A greater problem may be pseudo-support groups which, on close examination, are sponsored by someone with a financial or commercial interest in a product or treatment.

It is frighteningly easy for information to appear authoritative on the web. Ms Bourne says the Patients Association logo has been used without authorisation in the past. Lawyers' letters got it removed but the offending site then put the esteemed King's Fund logo on instead.

One site she felt gave good, detailed information aimed at patients was the BMJ-linked besttreatments.co.uk. But the Department of Health withdrew funding for this and patients now have to pay for access.

Kitemarking reputable sites has often been suggested and the DoH is working on a scheme to accredit information providers.

Behavioural change

As we have seen time and time again with the national IT programme, computer systems set up by the NHS to enhance patients' experience are problematic.

Under choose and book, patients can book their hospital appointment online after seeing their GP. But Dr Cundy says many have been unable to do this and argues that patients will be attracted more to targeted advice from their GP over which hospital to choose.

But the internet's great potential is when people have a long-term condition which requires ongoing management, says Dr Murray.

She says research suggests interactive health sites which can include peer support groups as well as clinical and practical information. can help people become better informed and supported, and may have better clinical outcomes.

Some sites offering a wide range of help for people with long-term conditions have been trialled. There is also evidence that online support can help smokers quit and problem drinkers reduce their intake.

'The real research questions are about how we harness this technology to bring about behavioural change. It may be different for different people.'

In the long run, she would like to see more of these sites, guided by evidence on what is effective.

Campaigners have proved themselves adept at using the web - demonstrated by the number of websites set up by opponents of reconfiguration and the use of online petitions on the 10 Downing Street website. Over 22,000 people. 'e-signed' a petition over the Royal Surrey County Hospital in Guildford recently and 31,000 supported the return of dedicated military hospitals.

Some aggrieved patients or workers have also used the internet to voice criticisms of their treatment. More positively many patients have used www.patientopinion.org.uk to comment on care received in local hospitals. Their comments are channelled back to the trusts concerned and there are plenty of bouquets as well as brickbats.

Health on the net: what do patients look for?

The most searched-for health keywords in the four weeks to 11 August show patients do not believe the NHS has the monopoly on wisdom.

1. boots

2. nhs direct

3. nhs

4. weight watchers

5. slimming world

6. norwich union

7. specsavers

8. weightwatchers

9. boots the chemist

10. bupa

11. shingles

12. race for Life

13. holland and barrett

14. nhsdirect

15. nhs careers

16. viagra

17. diabetes

18. fitness first

19. boots chemist

20. depression

Source: figures based on website hits and compiled by Intuition Communications.