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A right pig’s ear

The government panicked over the threat of swine flu – and got its response completely wrong

Brace yourself - swine flu is on the rise again. The second wave coincides with mounting disquiet among doctors about the way we as a nation are responding to the disease. A recent survey by Pulse, a leading GP periodical, found that 61 per cent of family doctors believe the government should review its policy of blanket provision of Tamiflu to all suspected sufferers. It also reported a growing number of cases that have resulted in death or serious harm after conditions such as meningitis have been misdiagnosed as flu, and wrongly treated.

Swine flu has wrong-footed everyone. For many years it was assumed that when the next pandemic arrived, it would create havoc: thousands would die in Britain alone; the exponential demand for services would be mirrored by the decreasing number of healthy doctors able to deliver them; societies would crumble. This projection was based in part on the 1918 global flu pandemic - which caused an estimated 50 to 100 million deaths - coupled with the high fatality rate among the few hundred cases of "bird flu" (H5N1) over the past few years.

In the UK, huge quantities of antiviral drugs were stockpiled, plans for establishing a national pandemic flu phone line were laid, and organisations both public and private were exhorted to draft detailed contingency plans for when the carnage began. Both chambers loaded, the shotgun was trained on the far horizon, the collective eye of the viral surveillance world squinting down the barrel, seeking out the first sign of an emergent threat.

Along came swine flu (H1N1). To be clear: people have died - 82 in the UK and an estimated 4,041 worldwide, at the time of writing. According to the World Health Organisation (WHO), roughly 60 per cent of the severe or fatal cases have occurred in recognised risk groups, such as people with grave underlying health problems; the remaining 40 per cent have affected fit children and adults. Each death is tragic, but the mortality figures are tiny, viewed against the millions of mild cases globally.

Writing in the British Medical Journal in September, Peter Doshi, a doctoral student at the Massachusetts Institute of Technology, proposed a framework to differentiate between disease patterns. Type 1 infections are widespread and severe - exactly the kind towards which the current pandemic flu plans are geared. But swine flu sits in Doshi's type 3 - widespread but usually mild. These different beasts present different challenges, but because pandemic planning failed to anticipate anything other than a type 1 scenario, swine flu has triggered a completely inappropriate response.

Marginal effects

Central to doctors' unease is the National Pandemic Flu Service (NPFS). Telephone-based and web-based assessments of symptoms are made using a computer algorithm. If the computer says "swine flu", patients are given antiviral medication, usually Tamiflu. The problems are twofold.

First, data from the Health Protection Agency, which conducts confirmatory laboratory tests on a sample of cases, shows that less than 10 per cent of NPFS diagnoses are correct. The other 90 per cent of supposed swine flu sufferers have other illnesses whose symptoms happen to overlap. (Doctors fare only slightly better, diagnosing at best a quarter of cases accurately.) Second, the drugs being doled out are by and large worse than useless, even in the correctly diagnosed cases. Tamiflu makes only a marginal difference to the course of uncomplicated flu and causes side effects in up to 40 per cent of people who take it. On the whole, these are just bothersome - vomiting is the most frequent - but serious, even fatally adverse reactions do occasionally occur.

In late August, WHO advised that antivirals were not necessary for fit patients suffering from uncomplicated swine flu. The Department of Health defends its continued policy of Tamiflu-for-all on "safety first" grounds. Its concern is those exceptional cases of severe disease in fit individuals, where Tamiflu might (no one knows for sure) make a difference if started early. However, the logic - that it is better to treat everyone than risk missing those who might have benefited - belongs to a strategy for dealing with a Doshi type 1 pandemic, where the chance of severe disease is high. For swine flu, damage from indiscriminate use of antivirals outweighs the supposed benefits of catching atypical cases early.

The real challenge of a Doshi type 3 pandemic is identifying the small minority who actually and urgently require help. These could be those rare individuals with severe flu, or they might be patients in the early stages of another serious disease such as meningitis. Doctors are good at doing this (though far from infallible) and many GPs believe that only medically qualified staff should be undertaking flu assessments, but this is not achievable, given our capacity for mass hysteria. During the first wave of swine flu - before the NPFS was launched - the NHS front line was overwhelmed by waves of worried callers in flu hot spots. One of the main reasons for setting up the NPFS was to prevent a meltdown in services, but it should now change its focus from diagnosing swine flu (at which it is hopeless) to identifying patients in trouble.

The trickiest problem is when patients who initially feel mildly unwell start to deteriorate. The Department of Health stresses that patients are advised to consult a doctor if they get worse, but this fails to appreciate the Tamiflu effect. Having been "diagnosed" with swine flu and put on antivirals, patients are then falsely reassured that appropriate treatment is under way. By stopping its blanket use of Tamiflu, the NPFS would greatly increase the likelihood of patients consulting a doctor if they deteriorate.

Lessons in planning

Swine flu may in time be seen as a great learning opportunity. It has exposed a rigidity in pandemic planning that needs urgent correction. WHO has a scale to denote the spread of in­fection - level six being pandemic. It needs to develop a simple, parallel system to differen­tiate between Doshi types, one that should trigger responses appropriate to the particular challenge posed.

For now, the Department of Health should stop sticking doggedly to contingencies laid against a very different threat. The public and the NHS need clear identification of the at-risk groups and a message that the danger of swine flu, for everyone else, is almost certain to be minimal. They also need information about the warning signs of a more serious problem. The vast stocks of antivirals should be left on the shelf to go quietly out of date.

Yet it may be too late. Another facet of the Tamiflu effect is that we have educated hordes of people that what they thought felt like just a bad cold (and, most of the time, was just a bad cold) needed treatment with powerful drugs involving mystical rituals with a special authorisation number and a flu friend. Doctors will be dealing with mass hysteria in the face of ­minor illness for some time to come.

Phil Whitaker is a doctor and novelist. He is currently working on his fifth novel, "Sister Sebastian's Library"

 

Computer says flu

What do malaria, meningitis, diabetic coma, leukaemia and appendicitis have in common? They are just a few of the conditions that were originally diagnosed as swine flu during the first wave of the pandemic. Most patients have lived to tell the tale; some have not. The case reports have been appearing in the letters pages of medical journals, and on discussion forums of networking sites for doctors. The GPs reporting them are frequently unsure who in authority should be informed.

In fact, the National Patient Safety Agency (NPSA) has been tasked by the Department of Health with investigating alleged misdiagnoses. In a statement, John Scarpello, NPSA deputy medical director, confirmed that the agency had received "a small number of reports where swine flu may have been misdiagnosed", but was unwilling to go into detail while the facts had not been established. Given that the reporting system is entirely voluntary, and few clinicians know to contact the NPSA, this "small number" of reports is likely to be the tip of an iceberg.

The National Pandemic Flu Service is a first: never before have patients been diagnosed by computer or unqualified call-centre staff. There is a real need for research to examine this approach, yet none appears to be planned. The Department of Health refers inquiries about patient safety to the NPSA, while the NPSA believes commissioning such a study would be outside its capacity and brief.

Phil Whitaker

This article first appeared in the 12 October 2009 issue of the New Statesman, Barack W Bush

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Tweeting terror: what social media reveals about how we respond to tragedy

From sharing graphic images to posting a selfie, what compels online behaviours that can often outwardly seem improper?

Why did they post that? Why did they share a traumatising image? Why did they tell a joke? Why are they making this about themselves? Did they… just post a selfie? Why are they spreading fake news?

These are questions social media users almost inevitably ask themselves in the immediate aftermath of a tragedy such as Wednesday’s Westminster attack. Yet we ask not because of genuine curiosity, but out of shock and judgement provoked by what we see as the wrong way to respond online. But these are still questions worth answering. What drives the behaviours we see time and again on social media in the wake of a disaster?

The fake image

“I really didn't think it was going to become a big deal,” says Dr Ranj Singh. “I shared it just because I thought it was very pertinent, I didn't expect it to be picked up by so many people.”

Singh was one of the first people to share a fake Tube sign on Twitter that was later read out in Parliament and on BBC Radio 4. The TfL sign – a board in stations which normally provides service information but can often feature an inspiring quote – read: “All terrorists are politely reminded that THIS IS LONDON and whatever you do to us we will drink tea and jolly well carry on thank you.”

Singh found it on the Facebook page of a man called John (who later explained to me why he created the fake image) and posted it on his own Twitter account, which has over 40,000 followers. After it went viral, many began pointing out that the sign was faked.

“At a time like this is it really helpful to point out that its fake?” asks Singh – who believes it is the message, not the medium, that matters most. “The sentiment is real and that's what's important.”

Singh tells me that he first shared the sign because he found it to be profound and was then pleased with the initial “sense of solidarity” that the first retweets brought. “I don't think you can fact-check sentiments,” he says, explaining why he didn’t delete the tweet.

Dr Grainne Kirwan, a cyberpsychology lecturer and author, explains that much of the behaviour we see on social media in the aftermath of an attack can be explained by this desire for solidarity. “It is part of a mechanism called social processing,” she says. “By discussing a sudden event of such negative impact it helps the individual to come to terms with it… When shocked, scared, horrified, or appalled by an event we search for evidence that others have similar reactions so that our response is validated.”

The selfies and the self-involved

Yet often, the most maligned social media behaviour in these situations seems less about solidarity and more about selfishness. Why did YouTuber Jack Jones post a since-deleted selfie with the words “The outmost [sic] respect to our public services”? Why did your friend, who works nowhere near Westminster, mark themselves as “Safe” using Facebook’s Safety Check feature? Why did New Statesman writer Laurie Penny say in a tweet that her “atheist prayers” were with the victims?

“It was the thought of a moment, and not a considered statement,” says Penny. The rushed nature of social media posts during times of crisis can often lead to misunderstandings. “My atheism is not a political statement, or something I'm particularly proud of, it just is.”

Penny received backlash on the site for her tweet, with one user gaining 836 likes on a tweet that read: “No need to shout 'I'm an atheist!' while trying to offer solidarity”. She explains that she posted her tweet due to the “nonsensical” belief that holding others in her heart makes a difference at tragic times, and was “shocked” when people became angry at her.

“I was shouted at for making it all about me, which is hard to avoid at the best of times on your own Twitter feed,” she says. “Over the years I've learned that 'making it about you' and 'attention seeking' are familiar accusations for any woman who has any sort of public profile – the problem seems to be not with what we do but with who we are.”

Penny raises a valid point that social media is inherently self-involved, and Dr Kirwan explains that in emotionally-charged situations it is easy to say things that are unclear, or can in hindsight seem callous or insincere.

“Our online society may make it feel like we need to show a response to events quickly to demonstrate solidarity or disdain for the individuals or parties directly involved in the incident, and so we put into writing and make publicly available something which we wrote in haste and without full knowledge of the circumstances.”

The joke

Arguably the most condemned behaviour in the aftermath of a tragedy is the sharing of an ill-timed joke. Julia Fraustino, a research affiliate at the National Consortium for the Study of Terrorism and Responses to Terrorism (START), reflects on this often seemingly inexplicable behaviour. “There’s research dating back to the US 9/11 terror attacks that shows lower rates of disaster-related depression and anxiety for people who evoke positive emotions before, during and after tragic events,” she says, stating that humour can be a coping mechanism.

“The offensiveness or appropriateness of humor seems, at least in part, to be tied to people’s perceived severity of the crisis,” she adds. “An analysis of tweets during a health pandemic showed that humorous posts rose and fell along with the seriousness of the situation, with more perceived seriousness resulting in fewer humour-based posts.”

The silence

If you can’t say anything nice, why say anything at all? Bambi's best friend Thumper's quote might be behind the silence we see from some social media users. Rather than simply being uncaring, there are factors which can predict whether someone will be active or passive on social media after a disaster, notes Fraustino.

“A couple of areas that factor into whether a person will post on social media during a disaster are issue-involvement and self-involvement,” she says. “When people perceive that the disaster is important and they believe they can or should do something about it, they may be more likely to share others’ posts or create their own content. Combine issue-involvement with self-involvement, which in this context refers to a desire for self-confirmation such as through gaining attention by being perceived as a story pioneer or thought leader, and the likelihood goes up that this person will create or curate disaster-related content on social media.”

“I just don’t like to make it about me,” one anonymous social media user tells me when asked why he doesn’t post anything himself – but instead shares or retweets posts – during disasters. “I feel like people just want likes and retweets and aren’t really being sincere, and I would hate to do that. Instead I just share stuff from important people, or stuff that needs to be said – like reminders not to share graphic images.”

The graphic image

The sharing of graphic and explicit images is often widely condemned, as many see this as both pointless and potentially psychologically damaging. After the attack, BBC Newsbeat collated tens of tweets by people angry that passersby took pictures instead of helping, with multiple users branding it “absolutely disgusting”.

Dr Kirwan explains that those near the scene may feel a “social responsibility” to share their knowledge, particularly in situations where there is a fear of media bias. It is also important to remember that shock and panic can make us behave differently than we normally would.

Yet the reason this behaviour often jars is because we all know what motivates most of us to post on social media: attention. It is well-documented that Likes and Shares give us a psychological boost, so it is hard to feel that this disappears in tragic circumstances. If we imagine someone is somehow “profiting” from posting traumatic images, this can inspire disgust. Fraustino even notes that posts with an image are significantly more likely to be clicked on, liked, or shared.

Yet, as Dr Kiwarn explains, Likes don’t simply make us happy on such occasions, they actually make us feel less alone. “In situations where people are sharing terrible information we may still appreciate likes, retweets, [and] shares as it helps to reinforce and validate our beliefs and position on the situation,” she says. “It tells us that others feel the same way, and so it is okay for us to feel this way.”

Fraustino also argues that these posts can be valuable, as they “can break through the noise and clutter and grab attention” and thereby bring awareness to a disaster issue. “As positive effects, emotion-evoking images can potentially increase empathy and motivation to contribute to relief efforts.”

The judgement

The common thread isn’t simply the accusation that such social media behaviours are “insensitive”, it is that there is an abundance of people ready to point the finger and criticise others, even – and especially – at a time when they should focus on their own grief. VICE writer Joel Golby sarcastically summed it up best in a single tweet: “please look out for my essay, 'Why Everyone's Reaction to the News is Imperfect (But My Own)', filed just now up this afternoon”.

“When already emotional other users see something which they don't perceive as quite right, they may use that opportunity to vent anger or frustration,” says Dr Kirwan, explaining that we are especially quick to judge the posts of people we don’t personally know. “We can be very quick to form opinions of others using very little information, and if our only information about a person is a post which we feel is inappropriate we will tend to form a stereotyped opinion of this individual as holding negative personality traits.

“This stereotype makes it easier to target them with hateful speech. When strong emotions are present, we frequently neglect to consider if we may have misinterpreted the content, or if the person's apparently negative tone was intentional or not.”

Fraustino agrees that people are attempting to reduce their own uncertainty or anxiety when assigning blame. “In a terror attack setting where emotions are high, uncertainty is high, and anxiety is high, blaming or scapegoating can relieve some of those negative emotions for some people.”

Amelia Tait is a technology and digital culture writer at the New Statesman.