Sorting fact from fiction: health information in the internet age

Nurses and patients are advised to take care to ensure the health information they find online is accurate

Nurses and patients are advised to take care to ensure the health information they find online is accurate  

Picture: Getty

Having been a nurse for 37 years, Ellen McPake happily confesses that she is no ‘digital native’. In fact, she says she’s not very good with technology at all.

But as Macmillan Cancer Support’s first digital nurse, she is a pioneer in harnessing the power of the internet to ensure it is a force for good.

Her role was created in response to fears that cancer patients were turning to the internet for information about their condition and treatment – and that they were at risk of finding bogus information on unverified sites. Part of her job is debunking the myths and the harm that can come from them.

‘The internet can be a great source of information, but it can also frighten people and put them at risk,’ she says, citing websites that say chemotherapy is more likely to kill you than cancer, for example.

‘It’s hard for people, especially if someone’s been told there is no treatment. They turn to the internet and it feels like hope, but the risk is that they are charged lots of money, thousands of pounds, for “spas” or coffee enemas or retreats or other “cures”. They pay the money but they still pass away. We can’t say to people “don’t do that” but we can tell them that there’s no evidence and let them make up their own minds.’

Behind the headlines

The problem of unverified health information that worries, gives false hope or even kills patients is not new. History is littered with vendors of quack cures. But the internet age has meant that such information is ubiquitous – and dangerous websites can be just a couple of clicks away.

This is something that concerns Enid Povey. As clinical lead for NHS Choices, her remit includes responsibility for Behind the Headlines, a guide to science that makes the news. Essentially, if you see a headline about a piece of health-related research in the media, chances are the team at Behind the Headlines will be working on a clearly written analysis of the facts behind the stories.

It’s a ‘dream job’ says Ms Povey, a nurse, who previously held senior roles with NHS Direct.

‘It can be a news item, something on television, like a story line in a soap opera,' she says. 'Every day, the team selects health stories and works with research specialists to produce the facts and publish them.’

Behind the Headlines summarises the stories; gives the source of the information, for example, a peer-reviewed journal; gives a verdict on how it has been reported in the media; and comes to a conclusion on how true or important a story is.

Health benefits

Examples from one day - 23 November - include research on the health benefits of coffee and figures on the number of heart failure patients.

‘We have a breadth of content on the NHS Choices website,’ says Ms Povey. ‘And it is evidence-based. But the internet can be a minefield for patients and for people working in the health service, unless they can be sure that information is coming from a trusted source.’

NHS Choices’ own research shows that people trust it and will choose it above other sources, even if it is not the top item that comes up under a Google search, she says.

‘People do tend to trust the NHS,’ she adds. ‘But the worry is when someone believes everything in the papers, or on the internet, especially if it’s someone who is clutching at straws.’

NHS Choices is also a hugely important resource for health professionals, she says, especially when they are asked about stories in the press, or information that a patient has found on the internet.

Trusted sources

‘Most nurses are used to looking behind the news – it’s part of their role all the time,’ Ms Povey adds.

The Department of Health has an ‘information standard’, a form of accreditation for trusted sources of information. Many charities have this ‘kite mark’, including the Alzheimer’s Society, which has a well-respected website containing a wealth of knowledge and information for professionals and patients and families, as well as running an online support community.

Head of advice services Erika Aldridge acknowledges that the charity itself has a responsibility to ensure its information is up-to-date and evidence-based, across all its networks.

Providing that trusted source of information is particularly important for dementia, she says, because there is no cure and limited treatment options – so people can be desperate to seize on any news story that gives them hope, however inaccurate. ‘Condensing lengthy research projects that have taken years to co-ordinate into a front page headline means a lot of the finer detail can be lost,’ she says, warning that information can be presented out of context and ‘sensationalised’.

‘Research results are often not as clear cut as reported on – purely because something may well be beneficial to reducing one recognised risk of dementia, it may not take into consideration the impact on other risks.’

Fact checking

Like the Alzheimer’s Society and Macmillan, Diabetes UK runs an online forum providing information and peer support for people with diabetes and their families. Clinical adviser Kathryn Kirchner says it’s an important resource, as is the information available across the charity’s website.

‘People usually have limited contact with health professionals, so are responsible for the day-to-day management of their diabetes,’ she says.

‘The internet is a primary source of information and people have the opportunity to look at it at a time and place to suit them. But there are risks: anyone can write anything.

'So we encourage people to come to our website where the information has been drawn up by people with clinical expertise, such as nurses and dietitians, as well as our communications staff, which is a nice combination.’

The forum is monitored and moderated by volunteers and by Diabetes UK staff to ensure that incorrect information is not presented as fact – for example, the ‘miracle’ cure from following a certain diet.

‘Digital nurses’

‘People can get quite passionate about their own experience – that’s human nature,’ Ms Kirchner says. ‘But the same thing won’t necessarily work for everyone else.’

The charity does not actively remove information unless someone is giving out dangerous advice, she adds.

At Macmillan, a large part of Ms McPake’s job is co-ordinating a virtual multi-disciplinary team to answer questions from patients and others about cancer. For example, November had a particular focus on head and neck cancers. ‘Sometimes the most appropriate person to answer will be me; sometimes it will be an oncologist, or a speech and language therapist,’ she says. ‘We don’t have medical notes – just what they tell us – so that can be challenging, but it’s interesting too.

But one of the first things that she has had to do is dispel misconceptions about her new job title. ‘Some people ask if a digital nurse is a real person or a robot,’ she laughs. ‘We’re not robots!

‘I’m not a digital native, and I’ve had to evolve over the years – you have to keep moving. I suppose I’m coming towards the end of my career, but I’ve got life experience and a nursing background, so hope that I’m helping to prepare the ground for the youngsters coming through. Because things are going to keep developing and evolving for them too.’

How to sort the facts from the fake

Consider where the information has come from. Is it a peer-reviewed journal or a trusted/verified website?

Consider when the information was published – does it take account of the most up-to-date research?

Consider who is publishing the information – is it someone with a vested interest, for example, someone with a product to sell

Cross-reference – has the information come from more than one source?

Look at the source, for example, a research paper. Was it carried out at a respected institution; what sort of research was it (for example, a randomised controlled trial, a review of evidence); how many people did it involve and does it fit with the trend of evidence, i.e. are the results in line with other studies or not?

Check whether it’s clear where the information has been sourced from for the article or web page

Consider cross-referencing more than one source

Based on interviews with Ellen McPake, Kathryn Kirchner and Erika Aldridge

Jennifer Trueland is a freelance journalist

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