30 October 2017
Macmillan Cancer Support is concerned that patients are turning to unverified sites for information which could leave them ‘needlessly frightened’ and at risk of ‘bogus cures’
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[i]:
- 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[ii].
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[iii]. 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[iv].
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.
For further information, please contact:
Jess Owen, Media & PR Officer, Macmillan Cancer Support
0207 091 2407 (out of hours 07801 307068)
Notes to Editors:
About Macmillan Cancer Support
You may have cancer, but you are still you with a life to lead, friends to see, family who need you and people to love.
Macmillan is here to help you get on with your life no matter how cancer affects you. We can give you the practical, emotional and genuinely personal support you need to hold on to who you are and what’s important to you.
We can be there for you during treatment, help with work and money worries and give you the time you need to talk about your feelings or whatever’s troubling you. Whether it’s everyday things like the cost to park at hospital during treatment or big stuff like explaining cancer to your children, we’ll do all we can to support you.
We’ll be honest: cancer can be tough. But we’ve helped millions of people through it and we can do the same for you. To us you’re always a person, never a patient. Life with cancer is still your life and we will help you live it.
From the moment you’re diagnosed, for as long as you need us, you can lean on Macmillan. Call us free on 0808 808 00 00 or visit macmillan.org.uk
[i] Macmillan Cancer Support/YouGov online survey of 2,005 people with a previous cancer diagnosis. Fieldwork was undertaken between 20th and 29th March 2017. The survey was carried out online. The figures have been weighted and are representative of the living with cancer population in the UK. The survey found that after receiving their cancer diagnosis 42% of people looked it up online. We have applied this to the estimated 2,500,000 people living with cancer in the UK to arrive at an estimate of 1,000,000. Estimate of the total number of people living with cancer in the UK is based on: Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202. (Projections scenario 1). Macmillan analysis based on extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015.
[ii] Macmillan Cancer Support/YouGov online survey of 2,005 people with a previous cancer diagnosis. The survey found 6% of those who looked up their diagnosis online (42% of the total sample). We applied this to the estimate 2,500,000 people living with cancer in the UK to arrive at an estimate of 60,000. Estimate of the total number of people living with cancer in the UK is based on: Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202. (Projections scenario 1). Macmillan analysis based on extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015.
[iii] Macmillan Cancer Support/YouGov online survey of 1,020 UK adults with a previous cancer diagnosis. Fieldwork was undertaken between 5th and 14th October 2016. The survey was carried out online. The figures have been weighted and are representative of the UK living with cancer population.
[iv] Quality Health, National Cancer Patient Experience Survey 2016 http://www.ncpes.co.uk/index.php. When they were told they had cancer, 27% say that they did not fully understand the explanation of what was wrong with them according to the results of the Cancer Patient Experience Survey (CPES) released on 21 July 2017. 0.4% said they did not know or could not remember. The 27% of respondents said they had not completely understood the explanation of what was wrong with them is crudely applied to the 285,000 people who had a first treatment for their cancer in 2016 (NHS England. Cancer waiting times. https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/) to give a minimum number who did not completely understand the explanation of what was wrong with them. When they were told they had cancer, 28% say that they were not given easy to understand written information about the type of cancer they had according to the results of the Cancer Patient Experience Survey (CPES) released on 21 July 2017.