Friday, September 28, 2007

Possibly a Watershed in Responsible Medical Reporting?

Faustus and the Devil Meet
For some of us, the day that The Observer published some egregiously poor reporting about the incidence of autism in the UK and a series of errors about the MMR vaccine, was a landmark in shoddy medical journalism. I dubbed it St. Maximilian Kolbe and Blessed Titus Brandsma Day: once The Observer had published those notorious pieces, it guaranteed abysmal coverage of the issue for the next 100 days.

There was outrage throughout the UK blogosphere. Many people wrote to The Observer to correct these stories, not least Dr Fiona Scott whose views had been misrepresented and one apiece from Prof. Baron-Cohen and Prof. Bustin. Baron-Cohen:
[Your] article linked MMR and autism.

The research does not...

The best estimate of the prevalence of autism is the 1 per cent figure published in the Lancet in 2006.

My view is that any apparent rise is likely to be driven by better recognition, greater awareness, growth in services, a widening of the definition of autism and a shift towards viewing it as a spectrum rather than a categorical condition.
Bustin (see Fitzpatrick for a summary of Bustin's devastating testimony):
Remarkably, there is no reference in your story to the fact that on 11 June the first of 4,800 cases in autism proceedings came to trial at the United States Court of Federal Claims in Washington. These are designed to establish whether or not autism can be caused by MMR. For the first time, a succession of highly respected researchers in epidemiology, genetics, virology, molecular biology and other medical and scientific disciplines - the 'medical and scientific establishment' of the Observer article - provided detailed evidence of why, in their opinion, there is no medical or scientific basis for any claim linking the MMR vaccine with autism.
You might have thought that the interventions from these two luminaries might have made it into the subsequent Readers' Editor response to the letters and the result of his investigations into the story. The short piece was riddled with self-exoneration. The Head of News says:
'I believe it was legitimate to include the thoughts of two of the authors of the study. We didn't conflate the two issues; the issues are already conflated.

'We worked hard to give a non-incendiary, balanced view. I believe we had to give the readers all the information we had. After all, they would ask, "Could MMR be a factor?"
Sins of omission and commission abounded. They seemed unrepentant about publishing the inflammatory 1 in 58 figure but grudgingly acknowledged that perhaps they might have included the other figures that were less disturbing and more inline with current estimates (amongst many much-needed corrections, they didn't touch the issue of it being a tool that may generate a 50% rate of false positives which may be acceptable if it has good specificity). It doesn't seem to disturb them that their conclusions are at considerable variance with the contents of of a report about that screening tool (pdf) from Baron-Cohen's research centre (HT to correspondent who sent me this link). The concluding sentiment and sentence are breathtaking for their complete lack of any awareness of the issues that fuelled the strong response of so many readers plus the introduction of a novel definition of accurate.
And the central point, in my view, is that the leaked story of the apparent rise in the prevalence of autism was a perfectly legitimate and accurate story in its own right, which did not need the introduction of the MMR theory.
Oh misery me! Omnes plecum plangite! However, if the Guardian/Observer offered a completely inadequate apologia pro ephermeris sua (HT Kristina Chew) then The Independent among many other papers wasvox stulti as was Channel 4 News for repeating those figures uncritically.

Jon of Holford Watch has been indefatigable in chasing corrections and amendments to these stories. He phoned both The Guardian and The Observer on many, many occasions to explain what was wrong with those stories. Jon was instrumental in having some online corrections published in The Guardian which carried some uncritical follow-ups that reproduced 'facts' from The Observer. Even after Dr Ben Goldacre published his remarkably restrained coverage of what was so appalling about media coverage of MMR-related issues, the editor of the The Observer refused to retract the story (judging by the the sins of omission rather than actual action).

The belief in a link between MMR-vaccines-mercury-autism has cultish overtones. Most religions have an act of contrition. Several months ago, I argued that the UK media collectively needed to make an act of contrition and perform an act of reparation. My preference was that these should take the form of some informed coverage and some active retraction of those abused figures. However, it rather seems as if obduracy in this matter may lead to a sacrificial act: Madame Arcarti floats the possibility that a senior person from The Observer is going, although the precise identity is unclear.*
This is the result of news ed Kamal Ahmed getting to keep his job - the result of an investigation into the embarrassment over the MMR splash that wasn't a story of two months ago (Catch up here, on the very good bad science website). The Scott Trust got involved, editor Roger Alton had to go to before them and receive six of the best like a naughty schoolboy. [Edited to embed URL.]
Jon has been diligent in pursuing a correction to 'MMR-idiocy' and has published a vigorous response to this news:
Hopefully the rumour is accurate, and Alton will face the consequences of his actions. I think it is entirely appropriate that – if a newspaper Editor publishes something both stupid and damaging on their front page, then refuses to retract the story – their career should suffer as a consequence of this.
Whatever the rights and wrongs of this rumour, it is not enough. I would far rather that The Observer stopped the Quackometer's MMR Apology Counter and retracted those stories and errors. I would rather that they did some soul-searching and resolve to be more responsible in reporting medical stories full-stop, but particularly those with significant public interest, and those where emotion seems to trump science. If somebody has to leave, that is a dramatic action: will it put editors on notice that medical reporting has to be handled responsibly and, above all, be accurate? It will be fascinating to see how this story plays out over the next few weeks.

Update* The Independent and an anon commenter on the Madame Acarti story indicate that they sacrificial lamb's identity may be illusory as may any hope for an improvement in journalistic standards for responsible reporting in science/health.

Related posts

Did Scoop Campbell Pull a Brizendine: More on Science and Journalism
Myth: Measles Is A Trivial Illness, There's No Point to Vaccination
MMR Vaccine Does Not Contain Mercury, Thiomersal, Thimerosal and It Never Has
Myth: Autism Omnibus Hearings Have Not Included Evidence About MMR
The Observer Still Doesn't Understand Corrections of Fact
Confused by 'Muddled Medical Research'? Scoop Campbell to the Rescue
Observer MMR Story Has Disappeared From the Archives: Why?
The British Medical Journal Embarrasses Itself by Reproducing That Notorious 1 in 58 Figure
Another Day of Shame for UK Media on Topic of MMR and Autism
Autism: The Truth Plus Sensitivity, Specificity and All That Is Decent to Reveal About Predictive Values
Wakefield: Another Triumph for Mainstream Journalism in the UK
Anthony Cox: How virulent were The Observer’s MMR articles?
Dr Michael Fitzpatrick on Stephen Bustin's devastating testimony and why there is nothing in the MMR-autism theory
Brian Deer for a very readable summary of The MMR-autism scare and Wakefield's role in it.
Brian Deer on Prof. John Walker-Smith and his involvement in experimentation on children with autism symptoms and his statement relating to the revelations about the Lancet paper.
Brian Deer on Prof Simon Murch and his involvement with the studies and his defence of the Wakefield research. Brian Deer has performed a thorough analysis of the differences between that statement and the claims made in the Lancet paper
Daily Telegraph on Prof Murch and his statement that there is no link between MMR and autism
Brian Deer has made available an easy-to-read format of the cross-examination of Dr. Arthur Krigsman in the Cedillo case of the Autism Omnibus.
Anthony Cox of Black Triangle: Virological evidence does not support a link between MMR vaccine and autism
Andrew Wakefield, Chronology and "Bad Science"
Patrick Holford and Dr Andrew Wakefield's Discredited Findings: Part 1 and Part 2
Wakefield's Latest Tent Mission on the Doctrine of Autism
Kevin Leitch on Andrew Wakefield and the death of the MMR debacle
Patrick Holford, MMR and What Passes for Hard Evidence
Mike Stanton on Patrick Holford and his unusual views on vaccination, MMR and autism
Ben Goldacre of Bad Science: Try Me, Sh*thead - the strange case of Carol Stott, Wakefield and the Observer
Dr Crippen of NHS Blog Doctor: Andrew Wakefield, MMR, Autism and the GMC
Tony Hatfield of Retired Ramblings: What the Observer's MMR Piece Didn't Tell You!
Tim Worstall: Crap Reporting in the Observer
Anthony Cox: New Autism Fears, A Man in Denial and MMR Memes in Newspapers
Mike Stanton: Cry Shame on Wakefield and MMR
Kristina Chew of Autism Vox: 1 in 58
Ms Clark of Autism Diva: Embattled Andy Wakefield Speaks and Wakefield and Walker-Smith: Dishonest and Irresponsible
Russell Brown of Public Address: Bad journalism, old stories
Wakefield and Why the Edith Piaf Routines is Baseless: Part 1
Patrick Holford and Andrew Wakefield

Thanks to Wellcome for use of this open access image.

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Wednesday, September 26, 2007

House of Lords Reports on Allergy And Allergic Disease

Imagine having a Ferrari that you are only ever allowed to drive in a velodrome. Imagine further, that there is a noise-limiter on the engine and that you are not allowed to exceed 12 miles an hour. The UK is in the somewhat remarkable position of having some of the most well-respected and expert clinical allergists and immunologists in the world yet employing them within a National Health Service that is infamous for its lack of adequate allergy services and the poverty of available resources.

A House of Lords Committee has been investigating allergy and allergic diseases in the UK. The House of Lords (HoL) committee has issued a comprehensive report (HL 166-1 or pdf) and made some strong recommendations that seem wholly appropriate to the scale of need within the UK.

It is breathtakingly difficult to obtain a referral to a clinical allergist in the UK. In the whole of the UK, we have the equivalent of 26.5 consultant posts: approximately 5 of those are specialists in paediatric allergy. Clinical allergists frequently express their concern that it is this lack of provision that is driving some desperate people towards inappropriately qualified advisers who may lack a full understanding of allergy, anaphylaxis, intolerance and their appropriate diagnosis and management. The lack of timely access to NHS allergy diagnosis and management pushes people who suspect that they have allergies towards the more dubious fringes of CAM or to testing laboratories that claim clinical validation and "sound science" for their product range of tests.

Both allergies and intolerances can have a dramatic and deletrious impact on quality of life. Allergy can kill. It is difficult to write about less severe forms of allergy because it is not practical to predict whether or not a mild allergy might suddenly become a life-threatening allergy.

A number of children 'grow out of' allergies but many of them don't although there is some indication that timely intervention for allergic rhinitis might mitigate the onset of asthma. Some children have allergies that are multi-systemic and this puts them at particular risk.

Allergies are typically managed, not cured. An exception to this is the laborious process of immunotherapy for some allergens which is rarely available on the NHS in the UK and is reserved for those people for whom medical management has failed. However, allergic rhinitis and hayfever respond well to immunotherapy. Immunotherapy can take a long time: people with allergies are exposed to small doses of the substance which causes a reaction in order to "desensitise" them and the exposure is increased gradually to erode the response. Immunotherapy is a well-established standard of care in other countries and known to lighten the disease burden for some allergies. Dr Lourdes de Asis has provided an excellent overview of allergen immunotherapy and reports that where it is used appropriately:
Immunotherapy is successful in up to 90-95% of patients with seasonal allergies and up to 85% of patients with year-round allergies.
Professor Hourihane gave evidence on immunotherapy to the HoL committee; he commented:
The NHS is the laughing stock of Europe for its absence of immunotherapy for allergic diseases.
The technique, which used be given in GPs' surgeries, fell into disrepute in the UK after the mid-1980s after a report from the Committee on the Safety of Medicines in 1986 found that immunotherapy had caused 26 deaths over the previous 30 years. However, Committee Chair, Baroness Finlay of Llandaff, reports that it seems that immunotherapy was being administered to "the wrong patients by the wrong people in the wrong places".

The report makes interesting reading and there are many useful recommendations that would make a dramatic difference to allergy services within the UK and a significant difference to the appropriate management of allergic disease and the quality of life of many people. One of the most striking recommendations is the unequivocal support for the re-introduction of immunotherapy as a management technique for allergy and allergic disease with appropriate caveats governing the people and conditions for whom/which this is most effective and the setting for such treatment (a specialist tertiary centre, see pg 79 pdf).
Immunotherapy is a valuable resource in the prophylactic treatment of patients with life-threatening allergies, or whose allergic disease does not respond to other medication. Although initially expensive, immunotherapy can prevent a symptomatic allergic response for many years, and may prevent the development of additional allergic conditions, so its wider use could potentially result in significant long-term savings for the NHS. We recommend that NICE should conduct a full cost-benefit analysis of the potential health, social and economic value of immunotherapy treatment. [pg 81, pdf.]
This is a comprehensive and fine report with many important recommendations that I shall explore in other posts (not least, the importance of food-labelling; the call for responsible professionals and charities to stop endorsing direct to consumer allergy and intolerance tests and an outline plan to set up a national network of specialist allergy centres).

However, one dispiriting note is that the HoL Committee can only make recommendations. The National Allergy Strategy Group (NASG) represents clinicians working in the field of allergy, and cautions that this is the fourth national report highlighting deficiencies and the Department of Health has failed to act on any of them despite increasing evidence of the marked increase in allergies in the UK. The NASG representative said:
Health Ministers must act now.

Unless health authorities and trusts are directed to develop services and funding is identified, patient care will not improve.

Investment to train more specialists in allergy and to support GP education is needed.

Failure to diagnose and treat allergy is resulting in continuing illness and cost to the NHS.
These clinicians are experts; they have a very clear view of the desperate state of allergy services on the NHS. It is long past time that the Dept. of Health should stop making these people tootle round velodromes; these clinicians deserve better and so do millions of people throughout the UK who need the provision that they recommend.

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