“Hi Matt, I’m dying”.
It was 2.30am and I had just been woken up by a call from my friend Amber. Earlier on that day she had discovered a lump in her breast and, along with identifying some other symptoms, she had no doubt that she was dying.
Her day had started normally, she felt fine. Got up, went for run. It was when she was showering that she noticed the lump, about the size of a two pence piece. She felt a twinge of concern but had to get to work.
At lunchtime, when the twinge had started to turn into a knot of worry, she decided to hit the internet. “There’s no point in talking to the doctor yet, it could be nothing” she told me. Instead she loaded Google and started her own investigation.
It didn’t take long for the words breast cancer to fill her screen. “Has your breast changed?”, “Is the lump smooth or does it have uneven edges?”.
As she read she started to identify more symptoms: “Discharge?” Maybe. “Rash?” Yes. “Dimpling?” Yes…
By 3pm her worry had blown up into fully formed panic. She couldn’t concentrate on her work and had started to feel really unwell. She called her doctor for an appointment but couldn’t be seen until the morning. It was going to be a long night.
When she got home, she did some more investigation. Everything she read confirmed her diagnosis; she had cancer and was going to die!
At 10am the next morning we were both sat in her doctor’s surgery and she was expecting the worse. Ten minutes later, armed with everything she had discovered about her condition, she went in to see the doctor.
Levels of appropriateness
When Amber first searched the vastness of the Internet she only knew one thing for sure; she had a lump in her breast.
A lump isn’t just a lump though.
Women in the UK are told from an early age that a breast lump could be cancer. The stage was set long before Amber saw the first screen of search results.
When she searched Google she was given over 6 million pieces of information to choose from, far too many to go through systematically. So she used the information she already had (a lump in my breast could be cancer) to narrow her search.
The more she read, the more she identified with the other symptoms of breast cancer. Her pre-existing knowledge, along with the search quickly focused her attention on answering one question: Do I have cancer?
The truth is that 9 out of 10 breast lumps are non-cancerous, but Google doesn’t discriminate in the way it gives people information. It wasn’t aware that Amber had only just noticed a lump, that she had no other obvious symptoms (before searching on the internet). It was simply responding to the keywords she entered into the search box.
At no point was she asked “Have your symptoms been assessed by a doctor?” and then pro-actively given information relevant to the reality of her situation: “You have noticed a lump which in a majority of cases is not cancer, make an appointment to see the doctor, but to put your mind at rest it’s more likely to be…”.
In fact, the more different pieces of information she read the more certain she became of her diagnosis. She was going to die.
The Internet has enabled an explosion of accessible health-related information to the public.
A study conducted by the London School of Economics states that 75% of the UK Internet population use the Internet to “search for advice about health, medicines or medical conditions[i]”.
Most start their search from one of the big search engines, giving them instant access to every piece of information published about any subject they could ever need to know about.
National health information websites fight for attention with individual experience blogs, support groups, Internet forums, commercial enterprises, drug companies and 1001 other different health information resources.
People are deluged with information but 75% of them cannot identify if the link they happen to select is trustworthy or not. Almost as importantly, most cannot assess whether the information they are reading is appropriate to their needs.
NHS Direct provides a telephone service staffed by expert nurses and health information professionals, who are specially trained to sort through the myriad different health information resources available. They have a massive library of trustworthy websites, books and leaflets that match every stage of the health information journey. Most importantly, they know how to assess what stage the caller is at on their health information journey.
Had Amber called NHS Direct (rather than me) she would have been asked about her symptoms and then Sue (or one of the other expert members of staff) would have calmed her down, explained to her that in most cases it’s nothing to worry about, and advised her to make an appointment with the doctor to be on the safe side.
Sue would have then given her the information she needed to understand all the other bits of information she’s been reading: “Puckering is…”, “A rash means…”, as well as giving her some additional information explaining what else the lump could be.
Half an hour later Amber walked out of her doctor’s appointment, the lump turned out to be nothing to worry about. I asked her what had happened.
The doctor, she told me, had spent the first 15 minutes trying to calm her down so she could understand what she was saying. She then spent the next 15 minutes conducting a breast exam and reassuring her that everything was going to be okay.
Opening up health information and making knowledge available to all is an important step in rebalancing health and social care in favour of patients. As such, it is part of the UK Government’s information revolution and choice agenda.
The convention goes that the more information we make available, the better off people will be, but recent studies have shown people find it hard to make choices when they are given too much information. Simply, the availability of the information itself prevents a person from analysing the different outcomes rationally, leading them to rely on rules-of-thumb to make their decisions about the information they consume and what they should do next:
A lump in my breast is cancer > I’ll find out about cancer.
Without providing the tools to assess the credibility of information and if it is appropriate to our patients’ needs, we risk putting an unreasonable burden on people like Amber to make sense of the many disparate pieces of information available and then to join them up in the correct way.