Sense about Science ? equipping people to make sense of science and evidence
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- Politicians can't have it both ways when it comes to evidence
- Dallas Buyers Club and the myths of Aids activism
- Opportunities for two people to join us
- 5 a day: why bother with fruit and veg at all?
- 5 a day all over the world?
- 5 a day: is it working and what does it cost?
- Asking for Evidence on 5 a day
- Taking part in a live plant science Q&A session
- Neuromyths and why they persist in the classroom
- All change with Celebrities and Science
Posted by Prateek Buch on 05 March 2014
The government has delayed or failed to release reports on the increased use of food banks and on immigration, despite guidelines that urge prompt publication. We must now press for timely publication of all government research in the interests of accountable public policy.
In January 2013 the Department for Environment, Food and Rural Affairs (Defra) commissioned researchers at the University of Warwick to examine the evidence around the increased use of food banks. The researchers completed their work in March 2013 but their report wasn't published by Defra until February 2014 – over a year since the study, designed as a Rapid Evidence Assessment, was commissioned.
Last year civil servants were asked to look at the effects of immigration on the labour market, re-analysing a widely-criticised 2012 study by the independent Migration Advisory Committee. Their report appears to have been blocked by No. 10 Downing Street, possibly because the new findings contradict claims made by the Home Secretary on the back of the previous, discredited study.
The Principles of Scientific Advice to Government, civil service guidance on publishing social research, and the Government Office for Science’s Guidelines on the Use of Scientific and Engineering Advice in Policy Making all specify that scientific and social research done by and for government should be published in a timely fashion – yet this has clearly not happened in either case. These aren’t the only examples of government-commissioned studies being delayed or altered – last year a key report into minimum alcohol pricing was delayed, and an LSE survey of academics commissioned by government to research public policy revealed that they’re leaned on to produce ‘politically useful reports.’
The delay in publishing these findings has meant that debates on the rising use of food banks and the effects of immigration are not informed by the best-available evidence. The excuses for not publishing are weak. We’ve seen government ministers and members of the clergy making contrasting claims about why more people are using food banks – and yet Defra has sat on research that addresses many of these claims, leaving the public ill-informed about the evidence. The delayed study on food banks also identified gaps in the evidence-base on food insecurity in the UK – gaps that researchers could have begun to address sooner if the report had been published once it had passed peer review.
On immigration, Theresa May made strong claims on the back of flawed research on immigration, while new analysis that contradicts those claims has gone unpublished – politicians can’t have it both ways.
These are not an isolated incidents – despite all the guidelines and codes-of-practice dealing with the timely, transparent publication of scientific evidence, we know of a number of public policy cases where studies are shelved or altered to suit a political agenda. We aren’t arguing that research should dictate the terms of what elected representatives set as policy. But discussions on issues as important as food poverty, substance abuse or immigration need to be informed by the best available evidence, so it isn’t on for politicians to parry questions about policy by commissioning research that doesn’t then get published.
We have therefore written to Defra Chief Scientist Professor Ian Boyd, and Government Chief Scientific Adviser Professor Mark Walport, asking them to explain the delay in publishing the food bank research. We’ve also written to the Home Secretary and the Prime Minister asking them to explain the delay in publishing the immigration research. We’re asking them to tell us what they’re going to do to ensure future research is published promptly.
As Professor Karen Rowlingson, who researches social policy and inequality at the University of Birmingham, told me, “The researchers were asked to complete this study in an extremely short timescale: within 9 weeks; but then the government sat on this important research for a year. The authors were very clear about the limitations of the study, given the time constraints, but they did identify key issues and clear gaps in the evidence base that it would have been good to have published sooner.”
We need answers from government on how they’ll ensure research is published promptly.
If government delaying publication of a study is something you have experience of, please get in touch – my email address is email@example.com
Posted by Michael Fitzpatrick on 04 March 2014
This is a guest blog from our trustee Dr Michael Fitzpatrick
The success of Dallas Buyers Club – which won three Oscars this week – reflects the enduring power of a number of myths surrounding Aids and its treatment, and the roles of Aids activists ranged against the malign forces of Big Pharma, the medical establishment and the regulatory bureaucracy.
Combining elements from the genres of fairy tale, pantomime and the Western, Dallas Buyers Club celebrates the life of Ron Woodruff, Texas redneck electrician and rodeo rider (he’s the one wearing the white Stetson cowboy hat) who was diagnosed with Aids in 1985 and ‘given 30 days to live’. Woodruff (Matthew McConaughey) has a fondness for beer, whiskey and cocaine, and a penchant for strippers and hookers. Though at the outset he shares the homophobic and misogynist prejudices of his peers, he achieves redemption through the inspirational influences of Rayon (Jared Leto), a transgender drug addict, and Eve (Jennifer Garner), an idealistic junior doctor (who still wears her hospital white coat when she visits her patients in their seedy motel rooms).
Woodruff is outraged at the lack of availability of treatment and the callous obstructiveness of the twin villains of the piece, the hospital specialist supervising an early drug trial (boo!) and the suit from the Food and Drug Administration (hiss!). In response, Woodruff conducts his own research in the local library and then dresses up in black as a vicar (of course!) to smuggle alternative treatments into the USA, first from Mexico and later from around the world, to be distributed to a booming market of customers through the scam ‘Dallas Buyers Club’. In defiance of both the odds and the authorities, Woodruff outlives his grim prognosis by seven years: our last glimpse is of him at the rodeo riding – bareback (geddit?) – a bucking bull.
The central myth promoted by this film is the notion that AZT (azidothymidine, or zidovudine) is an ineffective and toxic - ‘poisonous’ – treatment for Aids. It is implicitly blamed for Woodruff’s deterioration, his heart attack and Rayon’s death. In fact, AZT, a reverse transcriptase inhibitor, is one of the great success stories of modern medicine: the product of earlier research into cancer treatments, it underwent preliminary (‘phase one’) trials in humans in 1985 (only a year after HIV was identified as the cause of Aids) and was then the subject of a randomized control trial (as depicted in the film). This study reported favourable results in 1987, when AZT was licensed by the FDA (a process normally taking years reduced to an unprecedented 25 months). More than 25 years later, AZT remains the mainstay of Aids treatment – now usually in combination with other drugs – and it is also widely used to prevent mother-to-child transmission of HIV and in post-exposure prophylaxis. Like any drug, it has adverse effects, though these are mostly relatively minor and generally reversible. There can be little doubt that AZT has saved thousands of lives and has played a key part in the transformation of Aids from being a rapidly fatal disease to a chronic condition with a good long-term prognosis.
Dallas Buyers Club presents a disparaging portrayal of the randomized control trial (RCT) process through which AZT was introduced. It implies – inaccurately - that it was unethical to ‘fast-track’ AZT into human trials because earlier animal studies were inadequate – a criticism that runs counter to the familiar condemnation of the FDA for bureaucratically delaying the introduction of new treatments. The film also implies that there is something unethical about half the patients in an RCT being given a placebo, when, of course, this is intrinsic to the RCT method. It is not that half the patients are being denied an effective treatment, but that the only way to discover whether the treatment is effective is to compare the outcome in two groups, one receiving the active agent, the others not, in conditions in which neither they, nor their doctors (hence ‘double blind’) know who is getting what. At the conclusion of Dallas Buyers Club a feeble caption appears indicating that AZT is now used at lower doses than were used in the early trials – but this too was something learned from trials conducted when nobody knew what doses were appropriate, not the result of activist pressures.
There are many legitimate criticisms that can be made of the FDA and of the development of AZT – notably of the ways in which Burroughs Wellcome (later subsumed in Glaxo Smith Klein) made extraordinary profits out of research largely carried out in government, university and non-profit agencies (see Marcia Angell, The Truth About the Drug Companies: How They Deceive Us and What To Do About It, p24-27). None of these criticisms is made in Dallas Buyers Club.
The second set of myths presented in Dallas Buyers Club concerns the alternative Aids treatments presented as superior to AZT: these include ddC (dideooxycytidine, or zalcitabine), peptide T (dala1-peptideT-amide, or Dapta), and alpha interferon. All these drugs are variously gobbled up or injected by Woodruff in the course of the film. In fact, ddC turned out to be less effective than other reverse transcriptase inhibitors and to have more serious adverse effects – it is now rarely used. Though Peptide T was claimed to have beneficial effects on patients with cognitive impairments, studies showed it was no better than placebo (except in relation to a small group with more severe dementia). Though extravagant claims have been made for interferon in a wide range of conditions, its efficacy in Aids has not been established.
In an early episode in Dallas Buyers Club, Woodruff visits a clinic in Mexico run by a disgraced former US doctor, who, in addition to prescribing some of the above drugs, claims great benefits to his Aids patients from a combination of vitamins, minerals and herbal preparations. It is ironic that this regime is similar to that promoted under the aegis of former South African president Thabo Mbeki – for which he has been stridently condemned by Western Aids activists.
McConaughey and Leto richly deserve their Oscars for their bravura performances in Dallas Buyers Club. But just as, like many Hollywood productions, this film reveals brilliant actors in search of a decent script, its popularity reveals a society in search of a mature understanding of the relationship between science and medicine, on the one hand, and capitalism and the state, on the other. Fairy tales are reassuring to children, but Woodruff’s self-indulgent posturing, like that of the wider Aids activism that this film endorses, reflects an evasion of the realities involved in the treatment of Aids. These realities are that academic and clinical researchers (however self-serving), pharmaceutical corporations (however venal) and government regulators (however corrupt) have delivered remarkably effective treatments for Aids, over a remarkably short time period.
Posted by Emily Jesper on 12 February 2014
We want to recruit two people to join us for one year, a person to support campaigns work and a project support officer.
Our main campaigns are AllTrials and Ask for Evidence. Since the Defamation Act 2013, we also continue to collaborate on extending libel reform to other jurisdictions. The campaigns team coordinates Sense About Science’s daily responsive work. This supporting role will include experience across all the work of the campaigns team but will be predominantly supporting the AllTrials campaign. It includes developing the campaign websites; monitoring social media, publicity and policy issues related to the campaigns; and organising meetings, supporter communications and policy activities. Responsive work will include being the first line of response to phone and email enquiries, initiating responses to new issues and linking our body of work to new discussions.
The project team works with researchers and the public to address recurring themes, improve the communication of evidence and draw out underlying assumptions on difficult issues. This role will support the projects team and will involve research, writing, coordinating meetings with many different kinds of people, and dissemination. Upcoming projects include allergies, nuclear energy and forensic genetics. We also coordinate Sense About Science events and help other organisations, such as running workshops to develop ways to help people make sense of evidence. Our events programme includes the Peer Review Matters and Voice of Young Science (VoYS) media workshops, our annual lecture and reception.
At Sense About Science, no two days are the same and the post holders are likely to be involved in plenty of other activities going on in the busy office: representing Sense About Science at meetings, giving talks and writing blogs and articles. These two opportunities are ideal for graduates with a research PhD but would suit very different personalities and interests. The posts were initially conceived as paid internships, reflecting the funds available (£15k pa for each). However, the opportunities for extensive experience, taking a lead and responsibility (something we encourage at all levels) will leave the post holders well equipped for an entry into a good level post in related areas. We will also be reviewing the possibility of longer term posts as our organisation develops over 2014. They are therefore being offered as a fixed term employment. We can be a little bit flexible with hours, if the person is finishing writing up their thesis for example. There will be an interview late February, with a start date ideally in March. We want the people who join us to know about our work already so prior involvement in our activities is a bonus and familiarity with our website and campaigns is essential.
Please send a CV and cover letter to Síle Lane for the campaigns role firstname.lastname@example.org or Emily Jesper for the project support role email@example.com by 9am Thursday 20th February or give Síle or Emily a call at 020 7490 9590.
Posted by Chris Peters on 30 January 2014
This week we’ve asked for evidence behind the 5 a day message, whether it’s working and how much it costs and how advice differs across the world. But what are the actual health benefits of eating fruit and vegetables in the first place? David Bender, Professor of Nutritional Biochemistry at University College London gave us a steer on what the current evidence tells us.
“There is indeed good evidence that people who eat about 5 servings of fruit and vegetables a day are less at risk of atherosclerosis and coronary heart disease, as well as many cancers. There are a number of reasons for a protective or beneficial effect of a diet rich in fruit and vegetables.
- A diet rich in fruit and vegetables is likely to be relatively low in fat, and especially saturated fat. Dietary fibre (which comes only from fruit and vegetables) provides bulk in the intestinal tract, so improving bowel function
- Both dietary fibre and slowly digested and resistant starch are fermented to some extent by intestinal bacteria. The short-chain fatty acids produced provide a significant metabolic fuel for intestinal mucosal cells, and there is some evidence that (especially butyrate) provides protection against colo-rectal cancer.
- Fruit and vegetables are generally good sources of vitamins and minerals. They also provide a significant amount of potassium with little sodium (unless you add salt in cooking or at the table). Hence a beneficial effect with respect to blood pressure.”
So it’s pretty clear there are proven health benefits to eating fruit and vegetables. This week I’ve been keeping track of my own efforts to hit the 5 a day target. So far I’m averaging a less than impressive 3 portions a day – but that is an improvement on normal. I’d also like to think I can take a little credit for improving the diet in the rest of the office – many of whom have upped their fruit and veg intake as a result of hearing me talk about it every day. So from the admittedly small sample of this office – when the 5 a day message reaches people, they do try and eat more.
Tomorrow in our Q&A with Public Health England I’ll find out whether eating extra portions at the end of the week can bring up my average to 5 a day – or whether that’s cheating.
Posted by Chris Peters on 29 January 2014
Advice on how much fruit and veg you should eat every day varies hugely across the world. We’ve found out that depending on where you happen to live, you could be told to eat from 4 to 18 portions a day.
Volunteers and our Voice of Young Science network asked 40 governments for their fruit and veg recommendations, and the evidence they have to back them up. This map shows what we found. We’re still waiting for a few governments to get back to us – but we’re going to keep updating the map as the information comes in.
The World Health Organisation (WHO) guidelines recommend at least 400g of fruit and veg a day. Belgium, Germany, Slovakia, South Africa, Spain and the UK all follow the WHO guidelines and have interpreted this as 5 portions a day. Other countries recommend more. Canada advises 7-8 portions for women and 8-10 portions for a man - twice as much as the UK.
Austria also recommends 5 servings per day – but their servings are much larger than ours. According to the Austrian Government a serving of cooked vegetables should be 200-300g (100-200g if raw) and for fruit 125-150g. That’s potentially one and a half kilos of vegetables per day. To put that into perspective the UK 5 a day campaign reckons a portion is about 80g, so Austrians could be eating as many as 18 UK portions!
Singapore has a government backed campaign for ‘2+2 a day’ (two fruit and two vegetables) while Indonesia says ‘4 is healthy, 5 is perfect’. Perfect is quite a bold statement – I’m wondering what the perfect evidence is for that claim.
We also asked the 40 countries what evidence they based their recommendations on. Most gave the WHO guidelines. These guidelines date back to 2003 so we’ve asked the WHO what its role is in reviewing the evidence behind its recommendations. Should it be updated regularly based on new research? Finland, for example updated its recommendation from 400g per day to 500g based on a review of the current scientific data this month.
Come back tomorrow when we’ll be looking at the evidence behind the health benefits of eating fruit and veg, regardless of whether it’s 5 or 10 or 18 a day.
Interactive map – click the bananas!
Monday – Asking for Evidence on 5 a day.