Claire Read speaks to Macmillan’s digital nurse specialist about how many patients turn to the internet after receiving a diagnosis.
Being an information nurse in the digital age
For a long time, patients had only one source of in-depth healthcare information: clinicians. They would see a doctor, a nurse, or an allied health professional, and be told what to do. There would not be any questioning from the patient or debate. Then the internet happened.
Today, patients are just as likely to turn to Doctor Bing and Nurse Google as they are to their GP or to their specialist nurse or to their hospital consultant. Research suggests that temptation might be particularly strong if the condition is potentially serious. A Macmillan Cancer Support survey of 2,005 people with a previous cancer diagnosis, for example, showed that over two fifths had looked up information about their diagnosis online.
Ellen McPake has a standard line that she has taken to using when speaking to patients who are turning to the web in search of answers. “When someone’s really anxious and they’ve Googled, I say: ‘Google is not a diagnostic tool. Only a doctor can diagnose you’.”
In October, Ms McPake became Macmillan’s first ever digital nurse specialist. Her role is completely focused on online communication. She spends her days answering questions about cancer posed via Macmillan’s social media platforms and the charity’s online community.
It’s her job to ensure that, if people are tempted to Google, they’re getting to the right information. “You cannot tell somebody not to Google something, because we all do it,” emphasises Ms McPake.
“I’m there on a digital platform to signpost people to trusted resources, so they’ve got the information that can help them make decisions.”
You cannot tell somebody not to Google something, because we all do it
She says much of her work is with families rather than with patients themselves. “More often that not, the person who’s diagnosed with cancer gets lots of information from their specialist nurse, or the doctor that is seeing them. It’s the families who then furiously start to go online, they try to find information out, and they read the worst case scenario, and right away they’re thinking I’ve read this, and this must be true.
“So we’ll signpost them to a trustworthy source – anything that we think has got really good information – and we’ll debunk some things. We have to tell them ‘here’s the current evidence, here’s the science’. There are people out there who do believe what they’re reading, and we’re not going to change that. But it’s just saying here are the facts.”
Ms McPake has been an information nurse for the past six years, having previously worked as a breast cancer and an oncology nurse specialist. “The opportunity came up to work on the telephone support line, and I thought: ‘That’s just a different way of communicating with patients’,” she explains.
I’m there on a digital platform to signpost people to trusted resources, so they’ve got the information that can help them make decisions
“When I worked in the NHS and was a nurse specialist, you felt that you were supporting a group of people with the same cancer. And although that was very good because you were a specialist in that, I just wanted to expand my know-ledge again and support people in a different way.”
She says her new digital role is an opportunity to expand her expertise once again. “In some ways when you communicate online, it can be quite difficult. On the phone, you can change your tone, you can work out if somebody’s able to take quite sensitive information – just because they’ve asked the question doesn’t necessarily mean they want the answer.
“Whereas if you’re online and somebody asks you a question, you can’t really buffer it away. You’ve also got to be mindful that there are other people who are going to read that information. They might be in a similar situation, and they might not be at that stage that they want that information. So it’s trying to get the balance right.”
Ms McPake says it will be an increasingly important balance to strike, since Macmillan recognises digital is now the communication method of choice for many people. “As an organisation we’re trying to help as many people as we possibly can, and in the way they want [to be helped]. We’re aware people have got individual needs, and some people want to ask questions digitally.”
She also argues this is actually an issue for all nurses. “It’s important for us to say to folk: you probably will go away and Google, but stick to these sites.
“I think as nurses we’ve got a bit of responsibility for that. We can’t stop people getting their own information, but sometimes people just need a bit of guidance as to where they can get trustworthy information.”