Ellen McPake: We must protect patients from the internet's bogus cures and misinformation
Inaccurate and misleading online health information manipulates vulnerable people. Nurses have a duty to meet it head on, says Macmillan Cancer Support’s first digital nurse specialist.
Inaccurate and misleading online health information manipulates vulnerable people. Nurses have a duty to meet it head on, says Macmillan Cancer Support’s first digital nurse specialist
The rise of ‘Dr Google’ has changed the relationship between nurse and patient forever.
As nurses we need to understand the benefits and risks of patients looking up diseases, treatments and side effects online. The internet can provide helpful information but there’s an awful lot out there that could be dangerous or misleading. I’m working with Macmillan to help patients access verified and reliable information and support online.
These days, a patient will almost certainly have Googled their symptoms, possible treatment and side effects before you meet them; gone are the days when I would discourage people from researching their illness online. Finding out you are unwell can be a terrifying and overwhelming experience, and equipping yourself with information, especially from people in a similar position, can help you feel more in control of what’s happening to you.
More harm than good
Macmillan has researched the online behaviour of cancer patients and found that more than two fifths of people with cancer looked up information about their diagnosis online. Sometimes, unfortunately, this is because of poor communication from busy doctors and nurses.
The most recent Cancer Patient Experience Survey for NHS England revealed that more than a quarter of people with cancer said they did not receive easy-to-understand written information about the type of cancer they had. If this is the case, of course people are going to turn to the internet for information.
But what if some of that information is causing more harm than good? For example, a simple online search for ‘cancer’ brings up all sorts of unverified ‘cures’, from juicing diets and baking soda to shark cartilage. These often carry a hefty price tag as well as warnings about mainstream treatments. One site calls chemotherapy a ‘fraud’ and claims it isn’t cancer that kills people but chemo.
Exploiting the vulnerable
At a time when someone is already afraid, the onslaught of ‘information’ from unverified sites can make matters much worse. At best, this is poor quality information shared by misguided people who want to help. At worst, it is the sinister exploitation of vulnerable people for profit. Online scammers peddling bogus cures are making millions from the fears of vulnerable people.
In my new role as Macmillan Cancer Support’s first digital nurse specialist I will be dedicated to supporting people affected by cancer via all of Macmillan’s digital platforms. In addition to answering questions on Facebook, for example, I will help to run a series of monthly Q&A sessions on Macmillan’s online community, where a team of experts will answer questions on a specific theme.
It isn’t only those affected by cancer who need this kind of support. More nurses need training on the digital information available to their patients, so they can signpost them to trusted sites. After all, if you can’t beat them, join them – just do it better.
Ellen McPake is Macmillan Cancer Support’s digital nurse specialist