I raise this at the risk of falling out with some bloggers who I respect.

A couple of years ago I had a private discussion with NHS Blog Doc about the issue of confidentiality and blogging. We differed on our views on this. I was concerned that patients were not being asked for consent when case reports, or rather stories, were published on blogs. If you submit a case report to the BMJ or Lancet they will expect you to obtain patient consent. Here’s the Lancet:

Consent must be obtained for all Case Reports and Clinical Pictures.

Here’s the BMJ on their Minerva pictures:

We need written consent from every patient, parent or next of kin, regardless of whether the patient can be identified or not from the picture.

This is not the case in blogging. Stories about patients are routinely used to illustrate posts. It is easy blogging. Such posts are voyeuristic and give readers a vicarious interest if they are not involved in such situations. It’s rubbernecking on the net.

How easy is it to identify a patient? Well, in the case of an anonymous blog, perhaps it would be difficult. But what about those that give geographical details?

Tom Reynolds, author of Random Acts of Reality, is an E.M.T working for the London Ambulance Service, he recently posted a story about a one-year-old boy:

The job is a simple one - pick up patient from their home and take them to hospital as quickly as possible - no thinking required and I don’t even need to do any vital sign measurements on this job.

The patient is a one year old child in liver failure and her parents have just been told that a donor organ may have become available.

When we arrive at the home the whole place is in uproar, it’s late in the evening and every member of the family is scrabbling around gathering things into no small number of bags. Clothes, food and the sort of supplies you need for a very sick little one year old.

I do my best to try and bring a little calm to the chaos but the family aren’t having any of it, they are in near panic and their emotions are somewhere between fear and joy. I know when to admit defeat and I leave them be.

It’s powerful stuff. He writes well. I’ve even seen his blog linked to from an official NHS website.

What if the parents of that boy recognize themselves?

When you go to the doctor, nurse, pharmacist, or are seen by a paramedic, do you really expect your story to appear later on a website for other people to pour over? What right do bloggers have to make use of your story in order to create traffic and readership? What public benefit is being served? In the case of a BMJ or Lancet case report, the report may draw attention to a rare adverse effect of a drug, a new interaction, or a difficult case to diagnose. Even then consent is required. What gives blogs an opt out from standard practice in journals?

It is unfair to pick on Tom Reynolds, and that is not what I intend, especially because a recent paper points out that many medical blogs are guilty of this (via Bad Science):

We identified 271 medical blogs. Over half (56.8%) of blog authors provided sufficient information in text or image to reveal their identities. Individual patients were described in 114 (42.1%) blogs. Patients were portrayed positively in 43 blogs (15.9%) and negatively in 48 blogs (17.7%). Of blogs that described interactions with individual patients, 45 (16.6%) included sufficient information for patients to identify their doctors or themselves. Three blogs showed recognizable photographic images of patients. Healthcare products were promoted, either by images or descriptions, in 31 (11.4%) blogs.

Here’s another example, and another , and there’s lots more out there.

It is quite clearly unacceptable to be the subject of a blog post without consent. There is a difference between health care professionals and others. We should be trusted. We are invited in by patients to share the most intimate of problems. They trust us not to share those problems with others, without their consent.

Professional regulators are behind the curve on this. They must to catch up and quickly. Guidance should be issued and the practice should be stamped out. At the moment blogs are failing patients. They should have the same standard as journals, especially since blogs are publicly accessible in a way most journals are not.

The CTC have been helping a young man with Asperger’s Syndrome with his cycling using their cycling champions programme:

My son Will has Asperger’s Syndrome which for him manifests itself with deep depression and anxiety. Earlier this year at an appointment with his psychotherapist, he was asked to colour in a sheet of paper to reflect his feelings. He coloured the whole page black and used sharp, thick, heavy lines to represent his anxieties but in the bottom corner of the page was a small yellow triangle. The psychotherapist asked “what does this represent?” and he replied “riding my bike”. He went on to explain that when he is out riding his bike everything seems ok and manageable. As a result, we decided that we should ride bikes as a family and, with encouragement from CTC’s Cycle Champions Officer Steve Marsden and affordable second hand bikes bought from Recycle Bikes, we now have at least one long bike ride a week. Will has decided that he would still like to be a scientist, but he now would like to spend one day a week being a professional cyclist.

Adverse drug reactions (ADRs) are a massive burden on the NHS, and a significant cause of morbidity and mortality. When I worked on a cardiology ward, one of the more serious ADRs that occurred was severe haemorrhage associated with streptokinase. Rather than dying of a heart attack, the drug we gave to patients to improve their chances of survival would on occasion be the reason for the demise of the patient due (for example) to a cerebral haemorrhage.

The NPC recently reported on a systematic review of incidence and nature of in-hospital adverse events. The full paper is available as a free-access article at Quality and Safety in Health Care. The NPC note that the study shows:

• The median overall incidence of adverse events was 9.2% with a median percentage preventability of 43.5%.
• The median percentage attributed to medicines was 15.1% (interquartile range 11.9 to 20.4).

The NPC argue that this is in-line with a NPSA report Safety in doses: medication safety incidents in the NHS which they say showed that “between 3.5% and 9% of hospital in-patients experience harm from medicines.” However 15.1% of 9.2% is 1.39%, which is outside the range of the NPSA report. Thankfully, there is another well-conducted study due to be published later this year by the same group that published the 2004 BMJ paper on drug-related admissions to hospital. From what I have seen in presentations, the incidence is more in line with the NPSA report. It is possible that studies which are primarily focused on drug therapy have greater sensitivity to adverse effects of drugs than those which attempt to catch all patient-care events.

Another point worth discussing about the NPC blog post their view on the impact of the study:

The Impact
Adverse events related to medicines are a serious health issue. They cause levels of mortality higher than more high-profile health problems such as breast cancer or AIDS. In addition to the harm caused to individual patients, they also place a significant burden on healthcare resources.

The source from this comment arises from the report To Err is Human, an influential, and often cited, IOM report from 2000. The executive summary uses this comparison:

More people die in a given year as a result of medical errors than from motor vehicle accidents (43,458), breast cancer (42,297), or AIDS (16,516).

I’ve used similar statements myself in order to shock health care professionals into accepting the burden of ADRs as important and worthy of their consideration, but these sort of statements can also feed into some of the more deranged, but not totally uncommon, rants about Big Pharma. Here’s a relatively extreme example from JABS, the UK’s leading anti-vaccination site commonly linked to by the BBC:

big pharma and bad doctors have killed more people than wars in the last 50 years.

For gods sake what more corruption, cover ups and evil does big pharma have to do beside kill a million each year so these sick trolls will stop acting as as shills for them.

Who would you listen to , a mad sick corrupt troll who showns sociopathic tendanicies who thinks its fine for big pharma to commit genocide or real non corporate doctors and scientists who actually care about humanity and big pharma genocide and corruption.

I think sensible discussions about the harms of medicines need to avoid feeding into this meme, and documents like To Err is Human can unfortunately be used by opponents of evidence-based medicine to attack the use of prescribed drugs. What’s missing is the difference between breast cancer and prescribed drugs.

The difference between breast cancer, and the adverse effects of drugs, is that drugs have beneficial effects that, on balance, outweigh the risks they pose to society. For individual drugs when the risks are found to outweigh the benefits, then action is taken such as withdrawal of the drug. There is no corresponding benefit to having AIDS or breast cancer.

Every day individual patients make decisions about risk-benefits when they chose to take a medicine or not. Of course, many could be better informed about that risk-benefit balance, but overall the majority chose to accept the risks for the benefit they will receive. Sometimes patients will accept more risks than regulators think they should. Medicines are more like cars. There is a benefit from the mobility and personal freedom that cars give individuals, which seem to make death in car accidents relatively less important than knife crime, despite the massively higher numbers of deaths in car accidents (I accept the issue of intent makes a difference in this area).

The issue of preventability is also difficult. Some drugs increase the odds of experiencing an adverse event. Not all events will therefore be avoidable. Aspirin increases the risk of a gastric bleed. So not all gastric bleeds could have been avoided if aspirin had not been prescribed.

There is also the issue of monitoring: Coleman et al’s paper in the BJCP neatly explains the lack of evidence for effective methods of monitoring for harms of treatment. Here’s another cardiology example, which I also regularly saw, which Coleman uses to illustrate the difficulties of devising monitoring periods:

The incidence of hyperkalaemia in patients treated with spironolactone for heart failure seems much greater in practice than in the randomized controlled trial that showed the value of the treatment. This seems unlikely to be simply a problem of monitoring. In general terms, patients in clinical practice are sicker and less frequently reviewed than in clinical trials and therefore it is not surprising that in many examples the rate of adverse effects is higher in actual use when compared with the rates seen in the trials. Real patients may also be less likely to adhere to a stringent monitoring scheme, or more likely to have concurrent ill health that increases the chances of finding an abnormal result that is not due to the adverse reaction, or older than trial patients, and perhaps as a consequence more rapidly susceptible to the adverse drug reaction, so that the time between a reaction first being observable and it causing irreversible damage may be shorter. It raises the question of how to devise safe monitoring schemes that will remain effective when treatments move from clinical trials to general use.

So preventability can be in the eye of the beholder, and that eye is often trained on the events using a retrospectoscope, armed with more information, and time, than the clinician making the decision that led to the adverse effect.

And some adverse reactions are not preventable. Take streptokinase, discussed at the start of this post. Even with a perfect diagnosis, and evidence-based treatment, fatal adverse effects can occur. However, on balance streptokinase saved more than it lost, and this should be acknowledged when talking about the harms of medicines.

I am one.

Mobileme sucks in comparison to Gmail.

Photo from iboff.

That is all.

There’s a new website where you can leave a review of your doctor called iwantgreatcare.org. It has already been formally warned by libel lawyers acting on behalf of thirty-seven GPs, of the potential for defamatory comments to be posted by the public. There are some nice comments there too:

Many years ago he literally saved my life and has continued to be the best family doctor I have ever met.

and

Caring understanding, Intelligent and sensitive, Top Professional.

I’m not sure how useful such patient anecdotes are, take this one for example:

He was held in very high regard by the overwhelming majority of his patients. He was also respected by fellow professionals. His patients appear to have regarded him as the best doctor in Hyde. His register was full and there always seems to have been a waiting list. Patients liked him for a variety of reasons. Many would say that he ‘always had time’ for them. His surgeries overran but no one minded because they understood his wish to take whatever time was necessary for each patient. He never hurried them out. He always had time for a few words of a personal nature. Elderly patients and their families were particularly grateful for his willingness to visit at home.

That, you may have guessed, is Harold Shipman.

One of the most interesting comments from the owner of the new rating site is this:

The vast majority of comments have been positive -interestingly, the small number of spoof and malicious comments we have received have been traced back to doctors.

Very strange.

According to some of the more wacko-stalker elements of the UK’s anti-vaccine movement I am part of a government/pharmaceutical industry conspiracy to suppress the self-evident harms of vaccines. Supposedly, Ben Goldacre, Richard Horton and I comprise a supporting act to Roy Meadow in this regard. I am also alleged to be a shill for the industry, presumably paid. An accusation also leveled at me because I am able to use HTML and install Wordpress.

I have to say, this is news to me, flattering though it is to be linked to the editor of the The Lancet, who I do not know, and Ben Goldacre, who I have never met, but know through the internet because of his excellent blog.

So why do these people see conspiracies, where none exist? Charlie Booker explains in relation to the 911-truther movement:

recently I’ve found myself bumping into people - intelligent, level-headed people - who are sincerely prepared to entertain the notion that there might be something in some of the less lurid 9/11 conspiracy theories doing the rounds. They mumble about the “controlled demolition” of WTC 7 (oft referred to as “the third tower”), or posit the notion that the Bush administration knew 9/11 was coming and let it happen anyway. I mean, you never know, right? Right? And did I tell you I’m the Emperor of Pluto?
[...]
Embrace a conspiracy theory and suddenly you’re part of a gang sharing privileged information; your sense of power and dignity rises a smidgen and this troublesome world makes more sense, for a time. You’ve seen through the matrix! At last you’re alive! You ARE the Emperor of Pluto after all!

It should come as no surprise that one of the leading threads in length and numbers of readers in the UK’s leading anti-vaccine organisation’s forum is called “Debunking the Aids virus myth”.

The BMJ publish a study this week on multiple vaccinations in British soldiers. Multiple vaccines have been suggested to be linked to ill health following the 1991 Gulf war. Murphy et al examined soldiers deployed in Iraq since 2003.

Personnel who reported receiving two or more vaccinations on a single day were more likely to report symptoms of fatigue (adjusted risk ratio 1.17, 95% confidence interval 1.05 to 1.30), show caseness according to the general health questionnaire (1.31, 1.13 to 1.53), and have multiple physical symptoms (1.32, 1.08 to 1.60). These associations were no longer significant when number of vaccinations recorded in individuals’ medical records was used as the independent variable.

So individuals’ recall of the vaccinations received is not reliable, in comparison to medical records. Receipt of multiple vaccinations in UK armed forces personnel before the 2003 Iraq war has not resulted in adverse health consequences.

There are two issues here, one is that no harm was caused by multiple vaccines in the 2003 Iraq War, and therefore any association found between multiple vaccinations and ill health following the 1991 Gulf war may equally affected by such recall bias. The fear of multiple vaccines is a common lay concern expressed in the media, and by anti-vaccinators, based on limited understanding of the immune system, it is not unsurprising that the finger of suspicion was pointed at vaccines.

The second issue is that of recall bias, which Orac discusses in his reporting of the BMJ paper. He lists four conditions relating to the exposure or health outcome which can worsen recall bias.

• The event under study is highly significant in the life of the subject (such as cancer).
• The patient has a preconception that the exposure and the health outcome are related.
• The media reports an association between the exposure and the health outcome.
• The exposure or behavior are socially undesirable or illegal.

The first three points above apply to varying degrees to the alleged association between MMR vaccine and autism. Autism has a large emotional impact on the lives of the parents, there is a section of the public that has uncritically accepted the MMR vaccine-autism hoax, and finally, and perhaps most importantly, the UK media has irresponsibly reported on MMR vaccine for years. The effect of the media reporting of MMR vaccine on recall bias has been examined.

Andrews et al examined the issue of recall bias in their 2002 Recall bias, MMR, and autism paper in Arch Dis Child. They compared parents recall of the onset of autism with regressive symptoms, before the publicity surrounding Wakefield’s 1998 paper and after such publicity had become common place. The onset was recalled as occuring nearer to MMR vaccine administration in parents of children diagnosed after the negative publicity surrounding MMR vaccine, than in those parents of similar children who were diagnosed prior to the publicity.

People may take pride in the fact they don’t believe everything they read in the papers, but bias can be introduced into one’s perceptions by exposure to media reporting of safety concerns. In that respect, scare stories about vaccines can become partially self-sustaining, despite a lack of robust evidence to justify such stories.

This blog has previously noted the role of patient groups in lobbying for the use of new drugs in the NHS, and the financial relationships that can exist between them and the pharmaceutical industry. Such relationships should be transparent, but are often not noted in “Patient group demands drug X stories”.

Some of you may be familiar with Dr John Briffa, a doctor who has abandoned the challenging world of evidence-based medicine to embrace a career as a media doctor with an apparently thriving private practice in “nutritional and naturally-oriented medicine”. He advocates dietary treatment for autism with little evidence, lends his name to weird vitamin supplements for diabetes (hold that thought), and is, despite all the evidence to the contrary, still convinced that MMR vaccine is linked to autism. Perhaps most damningly of all, Dr Briffa is taken seriously by Prince Charles.

Dr Briffa has now also turned his attention to patient groups, in particular Diabetes UK. Dr Briffa is slow on the uptake. I left an electronic response concerning Diabetes UK on the BMJ website 5 years ago:

Diabetes UK are reported in the BBC-online’s Health section to be opposing the NICE guidance on the use of glitazones in Type 2 Diabetes. NICE advise that glitazones should be reserved until other treatments have been tried, such as sulphonylureas and metformin.

Diabetes UK’s spokesperson said: “Doctors and patients need to have access to the treatments that are best for them. Today’s ruling will deny that.”

“Diabetes is costing the NHS millions of pounds a day, much of which is spent on treating the long-term effects of the condition, many of which could be prevented with early, effective treatment.”

Diabetes UK has recently alluded to its transparency and accountability with regard to corporate sponsorship. In 2002 they received £750,000 from pharmaceutical companies.

I am unable to ascertain from their website whether any of these funds are provided by the manufacturers of either glitazone currently on the market. It would be helpful if Diabetes UK could have a list of corporate sponsors on their website.

Dr Briffa’s concerns are qualitatively different from mine. Dr Briffa believes Diabetes UK are deliberately advising diabetic patients to consume a diet that worsens their diabetes. This will then led to them to take more medication supplied by the drug companies that fund Diabetes UK. Dr Crippen asks if Dr Briffa has taken leave of his senses, and Pyjamas in Bananas has put up a post entitled: Briffa demented loon: Official.

There is a point at which evidence-based skepticism about the pharmaceutical industry crosses over into cynicism. That’s not all bad, cynics serve a useful balance to the industry. Further on, if one allows one self to be sucked in, one can cross the event horizon from cynicism to the black hole of conspiracy-addled ranting. Once over the line, few seem able to claw their way back to sanity.

A report in The Independent notes that measles is now endemic to the UK. Incidently they include a picture of a child and mother being threatened with a vaccine, why not a picture of a child with measles? Ben Goldacre comments.

I cannot believe the mainstream media are trying to blame this on Wakefield instead of themselves. This is beneath contempt.

The Independent seem amazing blind to the media’s influence. They wrote this in March of this year:

One of the greatest puzzles of the saga is what has sustained this level of mistrust in the medical authorities. Unlike most scientific controversies which flare up and die away, this one has simmered for a decade – and is now to be fired up again by the GMC case.

In 2004, they stated in a leader the following about Wakefield:

Are we wrong to detect the distant whirr of the same spin spin machine that so recently set about destroying the reputations of David Kelly, Andrew Gilligan and others?

In other news Oliver Kamm notes Melanie Phillips’ poor performance on MMR vaccine and intelligent design. Her continued reporting on MMR vaccine, her reliance on far-right junk science journals, and her views on science in general, mean that any statement on any matter is probably suspect if it involves logical thought. She may have been a great journalist in the past, she won the Orwell Prize for journalism in 1996, but I wouldn’t trust her to accurately tell me if it was raining. The rain is probably a scientific conspiracy to sell umbrellas or something.

They say as you get older you move from the left to right, Melanie Phillips seems to be taking that extra step further to lunacy.