From compliance to partnership: a different type of patient journey

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The BMJ has called for a patient revolution, a “fundamental shift in the power structure in healthcare” in which patients improve healthcare, and not just for themselves. This is not just about engaging patients with specific decisions affecting their care, moving away from the idea of doctors’ orders or compliance, in which patients take the dose of medicine prescribed for them. It is about opening up the whole decision-making process to patients as partners. It means greater openness about the extent of uncertainty in diagnosis and treatment for individuals, as well as patient participation in the development, design and implementation of new healthcare systems and policies.

The problems identified with healthcare are numerous and serious – too much medicine, secret clinical trial results, fragmented care systems, and vested interests, both professional and commercial. These articles argue that expertise in sickness and health can be found as much outside medical circles as within – and that this expertise can and should be harnessed.

The platforms and mechanisms needed for this patient partnership are starting to emerge. Just looking at the traditionally opaque area of clinical trials, the AllTrials campaign has had great success this year using social media to shine a light onto some of what is not known. Yesterday, Simon Denegri, National Director for Public Participation and Engagement in Research at the National Institute for Health Research (NIHR), told the House of Commons Science and Technology Committee about the OK to Ask campaign, which aims to encourage people to ask their doctor about clinical research.

Evidence will be at the heart of all this – understanding it and asking about it.

Sources

Moynihan R. The future of medicine lies in truly shared decision making. BMJ 2013;346:f2789
Richards T et al. Let the patient revolution begin. BMJ 2013;346:f2614.

Dripping with melancholy: depression and historical heroes

In 2009, Alistair Campbell and Nigel Jones wrote A World Without: The Fantastic Five, asking what the world would be like if ‘five giants of history’ had been prevented by prejudice from making their enormous contributions. Winston Churchill, Florence Nightingale, Abraham Lincoln, Charles Darwin and Marie Curie: all brilliant, all shapers of the modern world, all lived with significant mental health problems. Lincoln’s law partner, William Herndon, said “His melancholy dripped from him as he walked”.

But could their illnesses actually have helped them in their work? A recent article explores the evidence for the mental illnesses suffered by Churchill, Lincoln, Nightingale and Darwin, all of whom also experienced loss or difficulties early in life, and draws together ideas about how illness may have contributed to their achievements – that the challenges and circumstances of their illnesses may have facilitated success.

Abraham Lincoln, 1858, Abe,

Abraham Lincoln, 1858, by TP Pearson, public domain via Wikimedia Commons.

It would seem that Lincoln and Churchill had recurrent depression, and Churchill may have had bipolar disorder as well. Perhaps these men’s experiences prepared them for the difficulties of war and to “look trouble in the eye”. The article suggests that  some of Churchill’s personality traits that are normally considered liabilities – such as intransigence and belligerence – were assets, with Hitler providing an ideal outlet for his aggression. Psychiatrist Anthony Storr has said that “had Winston Churchill been a stable and equable man, he could never have inspired the nation”. Lincoln’s mental health problems have been documented by Joshua Shenk, who describes Lincoln’s depression as fuelling his greatness.

Florence Nightingale, aged 86.

Florence Nightingale, aged 86, in bed, ill

Darwin probably had a chronic anxiety disorder and Nightingale had serious physical and mental health problems and yet both produced huge volumes of work. Before the Crimea, Nightingale commented in her diary that she had “no desire but to die”; afterwards, she rarely left home for 30 years but was a prolific report and letter writer. Exactly what blighted her health is not clear: post-traumatic stress disorder is one possibility. Darwin, whose physical symptoms seemed to include nausea, vomiting, and fainting, commented that, “Even ill health, though it has annihilated several years of my life, has saved me from the distractions of society and amusement”. Perhaps their withdrawal from social obligations allowed their creative energies to flourish.

Sources:
Campbell A and Jones N, on behalf of Time to Change. A World Without: The Fantastic Five.
Carson J and Wakely E. Mental Illness: A Curse and a Blessing. History Today 2013.
Shenk JW. Lincoln’s Great Depression. Atlantic Magazine, October 2005.
Storr A. Churchill’s Black Dog, Kafka’s Mice, and Other Phenomena of the Human Mind,1990, Ballantine Books.

Health internet searches: early warning of drug safety issues?

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One common use of the internet is to search for health information. Could an analysis of search terms, and a little detective work, help provide early clues about drug side effects, before more traditional methods such as official reporting systems have kicked in?

This study examined the search logs of millions of US web users who had agreed to share their searches, anonymously and automatically, with Microsoft, during 2010. The authors particularly focussed on an interaction between two drugs (paroxetine and pravastatin) causing hyperglycaemia (high blood sugar) – an association only identified in 2011. So they tested whether people using both these drug names as search terms in 2010 – when they could not have known about the interaction – were more likely to include a word associated with hyperglycaemia than those searching for just one of the medicines.

The answer was yes: about 10% of those who searched for both drugs also performed hyperglycaemia-related searches, compared with 4% or 5% from the groups who just searched for either paroxetine or pravastatin. The analysis also showed that prescription drug-related searches were common, with 1 in 250 users looking up at least one of the top 100 drugs in the USA during the year. It also looked at 31 other pairs of drugs with a known association with high blood sugar (without such convenient timing as paroxetine and pravastatin, but where the information had been published in highly technical or otherwise inaccessible outlets), and with another 31 pairs associated with a randomly chosen side effect (with any real associations removed). It was possible to identify most of the known associations from the search logs.

The authors see a “potentially valuable signal” in these search logs, and liken the system to a large network of sensors for identifying possible side effects. Early days for a new early warning system perhaps – and a fascinating use of internet search data.

Sources:
Tatonetti NP, Denny JC, Murphy SN, Fernald GH, Krishnan G, Castro V, Yue P, Tsao PS, Kohane I, Roden DM and Altman RB. Detecting drug interactions from adverse-event reports: interaction between paroxetine and pravastatin increases blood glucose levels. Clin Pharmacol Ther http://dx.doi.org/10.1038/clpt.2011.83.
White RW, Tatonetti NP, Shah NH, et al. J Am Med Inform Assoc Published Online First 6 March 2013 http://jamia.bmj.com/content/early/2013/02/05/amiajnl-2012-001482.full.

AllTrials not SomeTrials: no more invisible evidence

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To assess the evidence, you need to know it is there.

Properly conducted clinical trials provide the best evidence for whether drugs work and are safe. But about half have never been published, and trials with positive results – where the drug concerned is shown to be safe and effective – are more likely to be published than negative ones. Patients can be harmed – for example if a treatment found to be harmful in an invisible trial is then given to patients in a new one – or medicines used ineffectively or wastefully, as a result. Researchers can’t plan research properly because they don’t know what has gone before. The problems with this situation have been well documented for years, but things may now be going to change.

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NHS Choices: homeopathy is a ‘treatment’ without evidence

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It’s official: homeopathy is a ‘treatment’ not a treatment.

The homeopathy entry on the NHS Choices website has been rewritten, following the media storm resulting from the revelation that the Department of Health censored accurate information about homeopathy after lobbying by the Prince’s Foundation.

The new entry starts by saying, “Homeopathy is a ‘treatment’ based on the use of highly diluted substances” and is bracingly frank in the evidence section: “There is no evidence for the idea that substances that can induce certain symptoms can also help to treat them. There is no evidence for the idea that diluting and shaking substances in water can turn those substances into medicines”. The evidence appears to have triumphed.

Is the speed with which this entry was rewritten a record?

Smoking bans may reduce risk of preterm births

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Bans on smoking in public places are linked with reductions in preterm births, says a study from Belgium published in the BMJ, which introduced smoke-free bans in three steps. Each time a ban was bought in, the risk of babies being born before 37 weeks fell. There were no downward trends in the period before the bans – and other factors such as ‘flu epidemics did not seem to explain the differences either. So, good news for the public health benefits of smoking bans as premature birth is an important health risk factor.

NHS Choices: based on the evidence, except when it isn’t

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Closer examination of the NHS Choices website, following the remarkable revelations about its article on homeopathy and the Department of Health’s insistence that homeopathic feathers are not ruffled, shows up something rather interesting.

Its editorial policy is clearly set out and appears sensible, at first. NHS Choices will, it trumpets, “strive to ensure that content is evidence-based, in other words that it is founded on the best scientific knowledge currently available”. Excellent. That’s what we want. And so on, through a reassuringly detailed process.

And then the sting in the tail. There, in black and white all along on its own website, NHS Choices says that before any piece of content for which there is a relevant policy is published, as part of the sign off process, it must be “read by an official at the Department of Health who checks it for alignment with that policy”. The website is strangely silent about what happens next, but perhaps we can guess.