Searching for cancer information online – what to watch out for

5 minute read time.

FormerMember

26 Nov 2014

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Over the last few decades, the internet has propelled the ‘Information Age’ into uncharted territory. We now have billions of web pages at our fingertips, all the free information we want, and the ability to communicate and share with people around the world. The internet offers people the chance to share anything they want, and to have more autonomy by getting information freely and easily. But we’ve also got to cope with things like information overload and untrustworthy websites.

If you’ve been diagnosed with cancer, chances are you’ll go online at some point to find information. But it can be tricky to know whether the information you’re reading is reliable and accurate.

Here at Macmillan, we know that information empowers people to understand their illness better and make informed treatment decisions. It also gives people a way to find further sources of support. So, while we want to encourage people to seek out information if this helps them, we also want to offer some tips to help you avoid incorrect, biased or even dangerous cancer information online.

Why you can trust Macmillan’s information

All our information at Macmillan is written by experts in cancer care. And it’s all reviewed by both medical professionals and people affected by cancer. It is accredited with the Information Standard, which means it’s been through a rigorous review process. We also update our information every two and a half years to make sure it’s always up to date.

For information about cancer, visit macmillan.org.uk\cancerinformation. If you’re wondering about something specific, use the search function on the website. If you’d prefer a booklet or leaflet on a certain topic, visit be.macmillan – they are all free and will be delivered to you in just a few days. There are lots of cancer information audiobooks on be.macmillan too, and we can produce other audio, translated, Braille, or large print versions of our information on request.

How to know if other online information is safe

If you want to look for information beyond Macmillan, it’s important to make sure it’s trustworthy. Here are some tips to help you:

If the organisation operates in England, does it have the Information Standard logo? This is a sign that the organisation has been assessed and is producing information that is evidence-based, medically accurate, up-to-date and reliable:
In all nations in the UK, you can use the Health on the Net (HON) website to find reliable health information online. Type a topic into the search box at the top-left of their website.
Look at the website’s ‘About us’ page – is the website run by a health or non-profit organisation (.org), branch of government (.gov), university (.ac.uk) or hospital? If so, it’s probably safe. If it’s a business or commercial website (.co.uk, .com), it might be trying to sell you something rather than give you unbiased information.
Does it include its editorial policy on the website? This might be under ‘About us’ or ‘About this website’. Check whether information is reviewed before it’s published, and check what evidence the organisation is basing its information on. If you want current, unbiased information based on research, it doesn’t hurt to be sceptical. You can read Macmillan’s editorial policy for an idea of what to look for.
Do the web pages say when they were published? And was it within the last few years? Do the web pages say when they will next be reviewed? These are all good signs.
Pay close attention to where the information on the website comes from. Many health and medical websites collect and post information from other websites and sources. The original source should be clearly identified, so be careful of sites that don’t say where their information comes from.
Does the website include links to ‘Sources’, ‘Evidence’ or ‘References’? Reliable health information should be based on appropriate sources, which you should be able to find out from the website. References might include national clinical guidelines, medical journals or cancer research studies.

If you’re interested in health information

If the field of health information is something you feel strongly about, you may want to visit the Patient Information Forum’s website. The Patient Information Forum is a membership organisation for professionals/organisations working in health information, but they have regular news updates on their website about health information today, why it’s important and what charities and organisations are doing in this area.

You can help Macmillan improve its cancer information by becoming a reviewer. This means you can comment on our booklets and leaflets to help us improve them. It’s something you can do from home, in your own time, as often as you like.

Advice from other people

Although it is advisable to seek any medical information from reliable, professional sources, it is true that sometimes the best advice can come from people who’ve been there themselves. In Macmillan’s online community, you can share your experiences and get tips and advice from others who know what you’re going through.

At other times however, you may be given incorrect, biased or sometimes down-right odd advice by friends or other people you meet! We’d like to ask you to share your experiences of being given good, bad or strange information about cancer. You can do this in the comments box below (you need to be logged in – if you still can't see the comment box, click on this blog's title at the top).

We're with you every step of the way

The Macmillan team is here to help. Our cancer support specialists can answer your questions, offer support, or simply listen if you need a chat. Call us free on 0808 808 00 00.

Comments? Feel free to add them below (you need to be logged in – if you still can't see the comment box, click on this blog's title at the top).

Keep in touch Follow Macmillan’s cancer information team on Twitter @mac_cancerinfo