Macmillan Cancer Support has appointed a Digital Nurse to combat ‘fake news’ online as it fears cancer patients are increasingly left to google their diagnosis without adequate support.
The Digital Nurse Specialist will be solely dedicated to answering questions from people affected by cancer online, on Macmillan’s social media platforms and the charity’s Online Community.
The charity has created the role in response to a growing demand for online information about cancer diagnosis and treatment. It is also concerned that patients are coming away from appointments without the information they need and are turning to unverified internet sites, leaving them needlessly frightened and at risk of bogus cures.
For example, one internet search brings up a website which says chemotherapy is a bigger killer than cancer itself whilst another site reports that baking soda can cure breast cancer.
Macmillan research, conducted by YouGov, also found that:
- Over two fifths (42%) of people with cancer looked up information about their diagnosis online
- Of those, 1 in 8 (13%) people said they went online because they didn’t fully understand what they had been told about their cancer
- An estimated 60,000 (6%) Brits with cancer thought they were going to die after looking up information about their disease online.
Previous research also reveals that one in three people (34%) say they were in a daze and couldn’t take anything in when they were diagnosed. The most recent Cancer Patient Experience Survey (CPES) in England revealed that more than a quarter of people with cancer (28%) said they did not receive easy-to-understand written information about the type of cancer they have.
The charity acknowledges that the internet is a vital tool for cancer patients to get information about their diagnosis, treatment options and support. But it says it’s important that people have access to trusted information online and can separate the wheat from the chaff, using websites that are accurate and reputable rather than those with incorrect or dangerous information.
In addition to rolling out this new role, Macmillan is calling for greater support for cancer patients online with healthcare professionals receiving more training on the digital information available to their patients, so they can signpost them to trusted sites.
Kerry Fleming’s 14-year-old son Kane was diagnosed with thyroid cancer in 2016. The 42-year-old mother from South Yorkshire says:
‘I had a million different questions running around my head and no one to answer them for me. That’s why I searched online. All I could think was that I needed answers. I wanted to be proactive, but was helpless and lost.
“I confused myself by looking at different sites. One article told me Kane’s cancer was highly treatable, another said there was a high chance of reoccurrence, another said radiotherapy. Every article contradicted the other. I made myself ill through the stress of it all.
“Having someone to answer my questions and to tell me we weren’t alone and to point me to trusted sites would have really helped.”
Ellen McPake, Macmillan’s new Digital Nurse Specialist, says: “As more and more people seek information about their cancer online, we want them to know that charities like Macmillan are able to offer reliable health advice.
“In my new role, I’m there to make sure people affected by cancer have a real person they can turn to online for information about their symptoms, cancer diagnosis and treatment.
Professor Jane Maher, Joint Chief Medical Officer at Macmillan Cancer Support, says: “It’s completely natural for people to want to Google their diagnosis when they’re told they have cancer. But with countless unverified statistics, fake news and horror stories on the internet, ending up on the wrong website can be really worrying. This can leave people pinning their hopes on a dangerous bogus cure or underestimating the benefit of routine treatments.
“When someone learns they have cancer, it’s really important that healthcare professionals fully explain what their diagnosis means and the support available to them. They should also be able signpost their patients to trusted sources online so they aren’t left open to incorrect or misleading information.”
Macmillan has also launched a new webpage dedicated to GPs which includes practical tools and resources on signposting their patients to support. GPs can visit macmillan.org.uk/gp for more information.