The internet is awash with information for the public on health and medicine.
For example, typing ‘cancer’ into Google can bring you hundreds of thousands, if not millions, of results – covering everything from scientific papers to posts on Twitter.
So where do you start? And how do you know that information you find on the web is reliable? Is it based on scientific evidence or just someone’s opinion?
Unfortunately some information is presented as fact when it really isn’t. This can be very misleading – and also distressing – for people looking for support in coping with a serious condition.
Despite this, a large proportion of cancer patients seek out online information, as reported in the British Journal of Cancer today.
Recognising this, for the past few years the Department of Health has been developing a ‘quality mark’ for health and social care information. Their programme aims to help the public in assessing which information sources are credible and reliable.
The team that runs Cancer Research UK’s patient information website – CancerHelp UK – has been involved in this work for a decade. We’ve made sure we are at the forefront in this area, because we feel so passionately that people with cancer deserve the best information and support.
There from the beginning
CancerHelp UK was the first cancer information website in the UK, having launched in 1995.
From the outset, we’ve taken the views and feedback of our visitors very seriously. In fact, the site was developed with extensive input from a local cancer support group. We became involved in the first Department of Health information accreditation scheme, gaining Information Partner ‘exemplary level’ status in the pilot in 2002.
We were then in the first wave of awards made in 2009, in the latest incarnation of the scheme – the Information Standard (IS), which aims to make sure those producing information for the public are following best practice in a wide range of areas.
It covers the whole editorial process, from using good quality evidence to making sure users are involved in information development, right through to ensuring there are adequate processes in place for responding to feedback and correcting errors. As a recent member of the IS Editorial and Development Board, I’m aware that promoting best practice in writing style, tone and clarity is also very much on their agenda.
The IS has a ‘quality mark’ that should be displayed on all material – both web and leaflets – that has been successfully accredited.
You can see it at the bottom of all our CancerHelp UK pages and on our health information leaflets. But we would like the Department of Health to actively publicise the scheme, and the quality mark, so that the public are aware of what to look for when seeking reliable health information.
But ensuring the quality of the information is only one part of the story.
The most important thing is that patients and their carers can actually get that information. This is where another Government scheme comes in – the Information Prescriptions programme. Since 2008 Cancer Research UK has been working with the National Cancer Action team and others to ensure that all cancer patients and their carers have access to high quality patient information within the NHS in England.
We know that people can be easily overloaded if they are given too much information at one time. So the programme aims to provide tailored information that is relevant to a patient’s situation.
For example, if they are having tests to diagnose or stage a cancer, their specialist nurse can provide information about the particular tests they are having. Or, when they are having treatment, they can have information about the type of radiotherapy or particular cancer drugs they are receiving. The system holds information on everything, from prevention and early detection right through to end-of-life care. So medical information for just about every point in a patient’s cancer journey should be covered.
Since the start of the Information Prescriptions programme, we have provided over 1,000 documents to support NHS patients – all adapted from our comprehensive content on CancerHelp UK. As we update the website, we also update the documents we’ve supplied. That way, we know that people with cancer will always get high quality information that is up to date.
The system is being rolled out to NHS Trusts across England, making sure that doctors and nurses at hospital level have access to it. But it’s also available through NHS Choices, so patients and their relatives can find the information for themselves.
The Information Prescriptions programme is being fully evaluated at each stage of development. The views of the staff using it are collected and patients who have received information through the system are being surveyed.
Getting feedback from those closest to the programme will help to ensure that it really does meet the needs of both health professionals seeking to provide high quality information, and those patients receiving it.
What can you do?
So there is help out there. It’s vital that you are confident that what you read about your cancer and its treatment is correct and up-to-date. Here’s a check list of what you can do:
- Read our guide to finding information on the internet
- Look for the Information Standard quality mark on health or medical websites you visit
- Ask your doctor or nurse if the Information Prescriptions Programme is operating at your hospital
- Try Information Prescriptions out for yourself at www.nhs.uk/ipg
- Visit CancerHelp UK for the most comprehensive, up to date UK cancer information, including our unique database of clinical trials written specifically for patients
Liz Woolf is head of of CancerHelp UK – the patient information website of Cancer Research UK