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Negotiating the information maze

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Before the invention of the internet, patients who wanted to find out more about their disease would be confined to wading through heavyweight medical books or incomprehensible research papers. Even then, access was limited as few patients had membership rights to the specialist libraries containing these sources.


VOL: 99, ISSUE: 39, PAGE NO: 52

Kathryn Godfrey is a freelance journalist


Before the invention of the internet, patients who wanted to find out more about their disease would be confined to wading through heavyweight medical books or incomprehensible research papers. Even then, access was limited as few patients had membership rights to the specialist libraries containing these sources.



In less than a decade, however, there have been radical changes in the spread of information. From their own homes patients can now find information on practically any disease, although it is primarily accessed by younger and middle-aged patients. Older people are more likely to still see the doctor or specialist nurse as their primary source of information.



Range of information
Information on the internet varies from specialised research papers to more populist sites with medical and health information. Another huge area is the self-help and support sites, many of which include anecdotal information and personal stories.



Cancer is particularly well served, with a huge range of organisations and individuals providing websites. Typing the word cancer into Google, the popular search engine, yields about 17.7 million results.



Martin Ledwick, senior cancer information nurse for CancerBACUP, thinks the web can be extremely useful and it is good for patients to have a range of information sources to help them understand their situation. However, there are concerns about the quality of some information. ‘Anyone can put information on the internet, so not all medical information has been checked,’ he says.



Another problem is that scientific papers generally apply to the group of people in the research study - probably with tightly defined criteria for acceptance, such as a particular cancer at a certain stage. The results may not apply to all patients with the same cancer, so can be hard to interpret.



‘We would encourage patients who are looking for information on the net to check what they have read with their cancer specialist, cancer nurse or GP. Or patients can ring the CancerBACUP helpline, which is staffed by nurse specialists who can help make sense of what they have found,’ says Mr Ledwick.



Quality of information
The quality of information on the internet is a concern of the Consumers’ Association. Its recent report, Patient Information: What’s the Prognosis? (2003) evaluates a number of sources, including over 20,000 UK health-related internet sites. The report reveals that these sites are often contradictory and not always reliable.



The CA is asking for the NHS Information Standards Board to work with existing kite-marking agencies to develop an agreed code and system of accreditation.



The Health on the Net Foundation has set up a code of conduct for providers of medical or health information and advice (Box 1). Reputable health sites subscribe to the eight-principle code, which aims to improve the reliability and credibility of information on the internet.



Helping patients
Jenny Wood, head of information resources at the Lynda Jackson Macmillan Centre for Cancer Support and Information in West Hertfordshire, has spoken to many patients who have gathered reams of information on their cancer from the internet, and has developed a strategy for helping them.



‘As a starting point I ask the patient to set aside the information they have come with and ask them to backtrack. I need to find out more about their story, what treatment they are having, what they know already.



‘Then I focus on their worries and their concerns to find out why they ended up searching the web. The search is often prompted by a particular anxiety. It may be, for example, that we have failed to give them some information that they need and we can then try to remedy that. Otherwise we can talk specifically about the information they found, focusing on their concerns.’



Ms Wood says patients sometimes find information about treatments that are not yet available or may never be available. Misinformation interferes with communication with patients. She explains: ‘It is difficult to get people to disengage from information they have obtained. The nurse then has a double job. She or he has to tell the patient that the information they have found on the net is not right or is inappropriate, and then to explain that their needs may be better served by another source of information.



Another area of difficulty is when patients read another patient’s personal story on the web. If it is negative and apportions blame, the patient can end up worrying that their treatment has not been right.



Ms Wood says when nurses give out information leaflets, they can explain the contents and be sure they are relevant, appropriate and at the right level. They can also check that the information has been understood.



Leaflets at the Lynda Jackson centre are categorised with a ‘traffic light’ system. Green information is suitable for all, orange is more specific and not suitable for all patients. Red information, such as clinical trials, carries the message that staff would prefer that patients talked it through with their doctor or specialist nurse.



Ms Wood says: ‘Ten years ago patients didn’t always realise they were allowed to know what drugs they were taking. But when information is available people want more of it. What we can do is help patients access good quality information on reputable sites and be there to try and answer their questions.’

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