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EDITORIALS: Richard Smith The discomfort of patient power BMJ 2002; 324: 497-498 [Full text]

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Sometimes patients know best

Jeremy Gambrill   (1 March 2002)

Irrationality or Healthy Skepticism?

Lenny Schafer   (2 March 2002)

PATIENTS FRIEND DESTROYED

Rita Pal   (3 March 2002)

The editor is (understandably) misunderstood

Richard Smith   (3 March 2002)

Misinformation does not mislead patients

Ellen Goudsmit   (3 March 2002)

Personal choice yes; at others cost no

Michael C Sharpe   (3 March 2002)

Re: Misinformation does not mislead patients

Ellen Goudsmit   (4 March 2002)

Patient's rights not patient power

Professor Richard J Simpson, Dr Dawn Dowding   (4 March 2002)

Before there was science, there was anecdote

Tony R Britton   (4 March 2002)

relative risks

Diana M Barker, Cheshire, SK11 7NG   (5 March 2002)

Re: Before there was science, there was anecdote

Ellen Goudsmit   (5 March 2002)

Responsibility.

A P J Lake   (5 March 2002)

Irrational choices or misinformed doctors and patients?

Richard Fuller   (6 March 2002)

Government reassurance is not reassuring

Jay S. Cohen   (7 March 2002)

Power-sharing, not a take-over

Peter D White   (9 March 2002)

The discomfort of doctor knows best

Roger M Goss   (10 March 2002)

If there were no professionals would they be reinvented?

James A Cave   (14 March 2002)

Patients have always had to live with irrational decisions

Kathryn A Page   (18 March 2002)

Taking issue

Gul Bano, Taking issue   (30 March 2002)

Is science a superior form of knowledge?

Richard Smith   (10 June 2002)

Re: Is science a superior form of knowledge?

A Chaudhuri   (11 June 2002)

Challenging our scientific expertise?

Alain M Vadeboncoeur   (13 June 2002)

Rain dancing and public health

John Hopkins   (18 June 2002)

Sharing information is good patient care

Barbara J Boucher   (28 October 2002)

Sometimes patients know best 1 March 2002
Jeremy Gambrill, prostate cancer patient Cuckfield, West Sussex Send response to journal: Re: Sometimes patients know best	Your editorial poses an awkward question for healthcare providers; a question being asked I suspect more loudly and more often than was the case even ten years ago. In this generation where good information access is determined more by quantity than quality professionals need to first to determine the source of the influence that apparently leads their patients to hold an supossedly unconventional attitude. Where the apparently ill- advised patient has a view driven by his own evidence or her conviction based upon belief the professional must give way, and with good grace. But when the cause of concern to the patient is possibly fueled by a misunderstanding of issues that have been subjected to further distortion by the mass media then I believe that healthcare providers have a professional obligation to assist the patient to reach an informed decision. The case of MMR illustrates the latter case. For the former might I cite fatigue amongst cancer patients where in one study 61% of patients believed this to be more of an issue than pain but only 37% of oncologists accepted the patients view.(Curt, G A; 'Fatigue in Cancer' BMJ 2001;322:1500) Hopefully none of your readers will subscribe to the 'Doctor knows best' view that prejudices informed choice, and reflects an attitude which can only serve to drive some anxious patients further into the arms of 'red-top' headline writers.
Irrationality or Healthy Skepticism? 2 March 2002
Lenny Schafer, Editor, FEAT Daily Newsletter 9629 Old Placerville Rd Sac, CA 95837 Send response to journal: Re: Irrationality or Healthy Skepticism?	I suppose it's only human to dismiss one's detractors as "irrational", or suffering some other form of mental incompetence, as Mr. Smith does in his editorial bemoaning his profession's loss of patient subordination. In a rational world, the expert's informed opinions could only prevail over those of the public lemmings, is the plaint. When patients, in growing numbers, see before their own eyes, their children disintegrate mentally after receiving an MMR inoculation and are then summarily dismissed as anecdotal hysterics by the experts, it is only natural for them to lose respect for the authorities. The expert's unwillingness to even listen to the "anecdotes" before dismissal is the public health equivalent to being told "let them eat cake." Mr. Smith should not be so irrational himself to think that the medical experts can slap down the noisy rabble so with such condescension and then expect them to salute their "evidence based" conclusions in response. Instead they will find their authority so guillotined. This is nothing as fancy as "postmodernism" as it is plain old grievance based rebellion that the experts brought on themselves with their autocratic presumptions that they can only be right and the rest, mad.
PATIENTS FRIEND DESTROYED 3 March 2002
Rita Pal, Editor NHS Exposed Send response to journal: Re: PATIENTS FRIEND DESTROYED	The danger of patient power is decision making by following the "sheep technique" and the wrong information. The media creates waves of this phenomena. Today its the MMR, tommorrow it may be the organ scandals, the day after it will be reports of a doctor at the GMC sentenced to guilt by the papers as opposed to a judge. Only the media think that the information they are providing is accurate, we doctors know different! There is too much media generated information misleading the public and causing worries whether there should be none. With due respect in the 1960s or earlier, doctors were their patient's friend and GP's called at your house and spoke about the pros and cons of the jab your child was going to have. While the governments and authorities rush and rally round to force the public into submission, they fail to understand that the very essence of the doctor- patient relationship has been ruined by excess protocols, excess press releases, excess orders for doctors as opposed to leaving it to the primary health physicians to discuss matters with their patients in a rational way. Gone are the days when doctors would sit by the fire in your house, drink a cup of tea and play with your dog and say " you know I think the your child should have the jab but if you dont want to, thats ok as well but you need to know the risks". Patients accept this form of relaxed less paternalistic orders. People are rarely receptive to orders but are more accepting to being given the information and allowed to make a choice. In many circumstances, most patients would be happy to be led by their GP.This is the key to any primary care initiative. Our present government has no idea of the relationship between doctor and patient as they continue its destruction by the ludicrous efforts at spin and protocols in their millions. Rebellion is a natural human instinct and little faith in the government is a recipe for this. This provides limited solutions for the patient. Our GPs need to be given the freedom to deal with their patients on their own terms, not the terms set by the government. I would like to see the old style of practise come back.. People are suffering from miscommunications with their GPs. Often elderly people say " our old GP was a nice one, this ones ins a rush with his mobile phone, he doesnt sit and have a cuppa like the old one did, I dont think I want to take his medicines" ! And so we have evidence of non compliance, rebellion and sheer misguided patient power. Patient power with the correct information is excellent. Patient power with the wrong information where people follow in rebellion is destructive not only for the medical profession but for the patient who remains lost without the direction of their friendly GP. A doctor should be a patient's friend, if they cannot be so, there will never be the fundamentals of persuasion. If this is not present, there will not be any success in primary care initiatives of any sort no matter how much the government bleats with the aid of their spin machines! Kind Regards Dr Rita Pal www.nhs-exposed.com
The editor is (understandably) misunderstood 3 March 2002
Richard Smith, Editor BMJ Send response to journal: Re: The editor is (understandably) misunderstood	Lenny Schafer misunderstands me, which is probably my fault. I was not in my editorial "bemoaning [my] profession's loss of patient subordination." Rather, I celebrate it. Similarly, I was not arguing that "in a rational world, the expert's informed opinions could only prevail over those of the public lemmings." Instead, I was arguing that "rationality" is only way to view the world and not intrinsically superior to other ways. And I was certainly not suggesting that doctors are more rational than patients and therefore superior. Many patients are smarter than their doctors. Einstein, Darwin, and Newton must all have consulted doctors. Initially I was hurt that I was so misunderstood, but I think I can see why. I started my editorial from the intellectual position of, I judge, many but not all BMJ readers--that is, that doctors ultimately do know best. It's always important to start from the point of view of your audience--or else your words or images are immediately lost. I then pointed out that most (but not all) doctors have already accepted that individual patients have the right to ignore their advice. The rest of the editorial then discussed whether the views of a large part of the population might prevail over the advice of "medical authorities." My conclusion was not that this was a good or a bad thing but rather that it was probably inevitable. But I do think it's a good thing. I'm suspicious of priesthoods--be they theologians, necromancers, the inquisition, doctors, scientists, or spin doctors--deciding what the rest of us should think, believe, and study. I end with a quote from Philip Roth: "There is truth and then again there is truth. For all the world is full of people who go around believing they've got you or your neighbour figured out, there is really no bottom to what is not known. The truth about us is endless. As are the lies." Richard Smith, Editor, BMJ
Misinformation does not mislead patients 3 March 2002
Ellen Goudsmit, Medical archivist\writer on psychological medicine London TW11 9QX Send response to journal: Re: Misinformation does not mislead patients	When patients make decisions, they are not just limited by a lack of scientific knowledge, but also by the lack of balance in the media. Is it any wonder that given the recent publicity, many are questioning the safety of MMR? Except for Panorama, most of the TV coverage has tended to overlook the opinions of a whole group of experts, i.e. the doctors and scientists with specialist knowledge of autism. However, when it comes to medical issues, the bias towards one school of thought at the expense of another is not limited to the lay press. Take the approach to myalgic encephalopathy (ME) and other chronic fatigue syndromes (CFS) in the BMJ. The editorial policy favouring psychiatric aspects of these conditions has given doctors a distorted picture of both the nature of the illnesses and the research. Unaware of the other side of the story, they can not make informed decisions and their narrow perspective undermines the doctor-patient relationship. ANALYSIS OF PUBLICATIONS ON CFS At the end of 2000, I reviewed the content of the publications on CFS which have appeared in the BMJ since 1995 to see if the nature of the papers reflected the global research, clinical opinion and changes in the diagnostic approach in relation to these conditions. The search of Medline for publications in the BMJ between January 1995 and August 2000 on CFS and ME identified 41 articles and letters. They included 6 original papers, three editorials, one review, a case history, a book review and a number of letters (see references). A similar search using the BMJ’s own search engine plus an independent database identified three additional items, all written by the BMJ editorial staff. Only one report of original research included findings inconsistent with a psychiatric explanation (Lane et al). One challenged the adequacy of a measure to assess abnormal illness behaviour (Trigwell et al) while two supported the management of CFS using cognitive behavioural therapy (CBT) and/or graded exercise (Sharpe et al 1996, Fulcher and White). Moreover, a short report misrepresented the illness ME (Scott et al). The only review during this period was an extract taken from Clinical Evidence (Reid et al). All the authors were mental health professionals. There were also three editorials on the illness, all expressing views consistent with a psychiatric explanation of CFS. The book review covered a text co-authored by two psychiatrists and was highly complimentary. However, given that it was written by a former colleague of one of the authors (not declared), this is perhaps not surprising (Mayou). Taken as a whole, the publications give the impression that inactivity, mood disorders and/or maladaptive beliefs play a major role in the perpetuation of CFS, and that there is virtually no support for alternative views such as those often expressed by patients. For instance, accounts have ignored or downplayed evidence suggesting: 1. the presence of ongoing infection, immune activation and\or muscle disease in a significant proportion of patients with well defined CFS. 2. the heterogeneity of the population means that findings relating to one subset should not be generalised to others. 3. CBT or graded exercise may not help patients with neurological\immunological symptoms, signs of immune activation etc. The only symptoms assessed in the trials have been fatigue, sleeping problems and emotional distress. The fact is that there were no papers on the immunological or virological aspects nor was there any item referring to new research on these topics published elsewhere. This has not changed since the analysis was completed. In a sense, the BMJ’s approach to CFS has been as even- handed and objective as the Sun’s treatment of the Euro. HOW FOUR AMERICAN JOURNALS APPROACHED THE SUBJECT same time period). JAMA The Medline search identified 14 items. Of these, two were original papers, 2 were case histories (same case over one year) and 10 were letters. The subjects of the research papers were treatment (hydrocortisone) and the relationship between CFS and neurally mediated hypotension. With only two studies, it is not possible to discern a clear bias towards any one theory. There was certainly no policy favouring the psychiatric\CBT model. American Journal of Medicine The Medline search identified 42 items consisting of 21 articles in a supplement (conference proceedings), 10 original reports and 11 letters. The supplement covered a broad range of subjects and views. Of the original papers not in the supplement, one was on treatment, three covered biochemistry and physiology, one focused on the validity of the diagnostic criteria, and two assessed risk factors. De Meirleir et al’s study concerned immunological aspects of the illness, with one editorial discussing its findings and another (by Manu) directing readers’ attention to the evidence linking CFS with cognitive-behavioural factors. Readers of the American journal of Medicine were well informed about the latest research. No study focused solely on one psychiatric theory, but there was an editorial and a number of letters which discussed CBT. There was no evidence of any bias or preference. Annals of Internal Medicine The Medline search identified 12 items, with one original paper (on prevalence), one review (on functional somatic syndromes), and ten letters. There are two few papers to assess bias, but the review on somatisation was balanced by the publication of six critical letters. I therefore cannot conclude that there was evidence of a preference towards one school of thought. Archives of Internal Medicine The Medline search identified 14 items, consisting of 6 original papers and 8 letters. The subject matter of the studies included treatment (fludrocortisone), prevalence, overlap with other conditions, a ten year follow-up with recovery rates and a similar paper on outcome, and the results of laboratory tests. There was no study focusing exclusively on a psychiatric aspect of the illness, though one of the letters discussed psycho-social factors. There was no study on the virology or immunology. Again, I found a wide range of articles and there was no evidence of a preference towards one aspect as opposed to another. POSSIBLE EXPLANATIONS FOR THE BIAS IN THE BMJ Some may argue that the BMJ chose the best articles from those submitted. However, all the rejected papers on immunology and neurology were subsequently published elsewhere, so they couldn’t have been that bad. Moreover, any claim by the BMJ to publish ‘best evidence’ is difficult to reconcile with the often deeply flawed pro-psychiatric research which was accepted. Take the review of treatments (Reid et al). Firstly, this overlooked a number of relevant trials in order to support the contention that CBT was “effective” and that graded exercise produced “substantial improvements”. Secondly, it disregarded notable flaws in the ‘successful’ trials, such as the fact that the only symptoms assessed were fatigue - not always assessed using a reliable measure (e.g. Sharpe et al 1996) - and emotional distress. Thirdly, the review failed to note that the follow-up of one trial had not confirmed the initially reported differences between the groups. I could go on. Another example is the editorial which suggested that many doctors still advocate the "rest cure" and implied that most patients take that advice (Sharpe and Wessely). The fact is that the strategy described has not been recommended in relation to the clinical management of CFS in any medical journal in the past two decades, nor has it been advocated by the two national patient groups during this time. The most commonly used coping strategy is in fact pacing, but this was not mentioned here, or in the review. Sadly, errors are not always corrected, nor flaws discussed. To err is human but in relation to CFS, they tend to reinforce the uni-dimensional, negative stereotype of this patient population. For example, one writer implied that the patients with CFS had manipulated the World Health Organization (WHO) and persuaded them to "include myalgic encephalomyelitis under the diseases of the nervous system in ICD-10" (Delamothe). This is simply untrue, as a call to the WHO would have confirmed. He was also incorrect when he claimed that "supporters of myalgic encephalomyelitis....landed a Myalgic Encephalomyelitis Act on the British statute books, requiring an annual report to be made to parliament on its causes, effects and treatment". There is no ME Act in the existing British statute books. FINAL THOUGHTS I enjoy reading the BMJ and have found no evidence of bias towards other conditions which interest me. Indeed, in relation to breast cancer and conditions like premenstrual syndrome, articles have been authoritative as well as balanced. This is a problem peculiar to fatigue syndromes, and perhaps Gulf War illnesses. The point is, it’s a problem. This bias disempowers doctors and therefore harms patients. In a nutshell, we now have misinformed and sometimes hostile doctors, dealing with frustrated and often hostile patients. And depending on the vote on ‘non-diseases’, there’s even more psychobabble to come! The solution is to offer readers a range of expert opinions, and not just in the letters section. Allow people like me to present the other side of the story, so you can make truly informed decisions. So you can understand your patients better and offer them more therapeutic options. Some patients are misguided, but it’s not because they are all prejudiced against mental illness or not very intelligent. In my view, the current controversy has more to do with the misleading name and the inadequacy of the current definition. And that is our fault, not the patients’. PS. The Press Complaints Commission does not recognise the concept of medical fact. I tried on three occasions to challenge factually errors in medical articles citing the section of the Code which deals with inaccurate and misleading information. The response that the authors were expressing an opinion. Indeed, none of my complaints ever reached the investigation stage. Delamothe T. Look at ME. BMJ, 1994; 308: 798. Fulcher KY and White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ, 1997; 314: 1647-1652. Lane RJM, Burgess AP, Flint J, Riccio M and Archard, LC. Exercise responses and psychiatric disorder in chronic fatigue syndrome. BMJ, 1995; 31: 544-545. Marcovitch, H. Managing chronic fatigue syndrome in children. BMJ, 1997; 314: 1635-1636. Mayou R. Reviews. Chronic fatigue and its syndromes. BMJ 1999; 318: 133. Reid S, Chalder T, Cleare A, Hotopf M and Wessely S. Chronic fatigue syndrome. BMJ 2000; 320: 292-296. Scott S, Deary I and Pelosi AJ. General practitioners' attitudes to patients with a self diagnosis of myalgic encephalomyelitis. BMJ, 1995; 310, 508. Sharpe M and Wessely S. Putting the rest cure to rest - again. BMJ, 1998; 316: 796. Sharpe M, Hawton K, Clements A and Cowen PJ. Increased brain serotonin function in men with chronic fatigue syndrome. BMJ, 1997; 315: 164-165. Sharpe M, Hawton K, Simkin S, Surawy C, Hackmann A, et al. Cognitive behaviour therapy for the chronic fatigue syndrome: a randomised controlled trial. BMJ, 1996; 312: 22-26. Smith R. Editor’s choice. Unpacking the black box of qualitative research. BMJ, 1995; 311: July 1st Straus SB. Chronic fatigue syndrome. BMJ 1996; 313: 831-2. Trigwell P, Hatcher S, Johnson M, Stanley P and House, A. "Abnormal" illness behaviour in chronic fatigue syndrome and multiple sclerosis. BMJ 1995; 311: 15-18. With thanks to my colleagues who checked the analysis but prefer to remain anonymous.
Personal choice yes; at others cost no 3 March 2002
Michael C Sharpe, Consultant Royal Edinburgh Hospital, Edinburgh EH10 5HF Send response to journal: Re: Personal choice yes; at others cost no	Sir, Richard Smith has, by accepting individual choice of medical treatment as an inevitable consequence of 'postmodernism', even if that choice is not based on scientific evidence, raised an important issue that threatens our publically funded health care system. Doctors have, for better or worse, accepted the role of arbiters of need using the criterion of scientific evidence of effectiveness. If I choose a treatment that is not recommended by my doctor or based on the the best evidence of effectiveness can I reasonably expect other taxpayers to pay for it ? And in view of the recent evidence published in this issue of the BMJ that homeopathy is ineffective can the taxpayer be expected to fund it ?
Re: Misinformation does not mislead patients 4 March 2002
Ellen Goudsmit, Medical archivist Send response to journal: Re: Re: Misinformation does not mislead patients	Apologies to all. The title of this response should have read 'misinformation does not just mislead patients'. I'm getting my new glasses tomorrow!
Patient's rights not patient power 4 March 2002
Professor Richard J Simpson, MSP Ochil constituency scottish parliament, PHQ George iv Bridge Edinburgh EH99 1SP, Dr Dawn Dowding Send response to journal: Re: Patient's rights not patient power	Sir, Public confidence in 'experts' has been severely damaged by the failure of the Conservative Government to ensure that the data and scientific advice surounding the BSE affair was published timeously. It is to be hoped that the Freedom of Information Bill currently going through the Scottish Parliament will help redress the balance. However there is a propensity [in Scotland at least] for poorly informed 'medical' correspondents to give equal weight to random observations repeatedly voiced by well focussed campaign groups as to peer reviewed papers. The media must play its part in ensuring that the debate on any topic is evidence-based. But at the end of the day it is the patient, or in the case of MMR, the parent, who has the right to decide.The Forth Valley Primary Care Research Group has, with colleagues at Stirling University, developed a computerised decision-making tool in which the risks of alternative treatments are assigned values by the patient alongside the best evidence of probability. Thus death as an outcome would commonly be seen by 'experts'as the worst outcome, but the patient might feel that it ranked lower than some adverse effects for them personally. The patients' choices and examination of the computer log showing how their choices were arrived at provides a much better basis for a patient/professional partnership than trying to hammer home the experts' view as information.
Before there was science, there was anecdote 4 March 2002
Tony R Britton, PR & Communications Manager The ME Association Send response to journal: Re: Before there was science, there was anecdote	Somewhere, a start should be made. The Editor's inference that patients were wrongly given the upper hand in the Chief Medical Officer's working group on CFS/ME begs the question: "Where to begin?" The whole field of CFS/ME is chronically under-researched - in epidemiology, neurology, immunology, endocrinology and pathogenesis, to name but a few areas. Years of medical prejudice, epitomised in the BMJ attitude to 'non-diseases', have given us very little evidence-based medicine to go on. The CMO working group decided that patient anecdote was a good place to begin. But the CMO was an conscious as everyone else that assumptions must now be tested scientifically, and has asked the MRC to compile a research programme as a matter of urgency. Incidentally, most of the working group stayed with it right to the end. Your assertion that "half the members resigned" was just not true.
relative risks 5 March 2002
Diana M Barker, Research Associate Gardiner Caldwell, Macclesfield,, Cheshire, SK11 7NG Send response to journal: Re: relative risks	Sirs, To add to the debate as to whether a member of the public has the right to refuse treatment and thus put others at risk, as in the case of children not being vaccinated, it is worth pointing out that the vast majority of the general public appear unable to weigh up relative risks. This was beautifully demonstrated during the height of the BSE crisis, by a young lady, cigarette hanging from mouth, stating that 'no way am I eating beef - it's far to dangerous!' Hopefully someone pointed out to her that if she wanted to live longer, there was another surer way of doing it! This lack of ability to weigh up risks may have many causes, the most obvious ones being the lack of strong scientific eductation and misinformation in the popular press. Until these are addressed, it may well be that a doctor knows best approach must prevail. The risks to society as a whole are too large.
Re: Before there was science, there was anecdote 5 March 2002
Ellen Goudsmit, Medical archivist Send response to journal: Re: Re: Before there was science, there was anecdote	Tony Britton's assertions about the apparent lack of evidence-based research relating to ME and CFS illustrates the peculiar attitude of the ME Association and other CFS patient groups towards the scientific literature. There is plenty of interesting medical research relating to the chronic fatigue syndromes. Unfortunately, the Working Party decided not to use an experienced archivist\librarian to help them find it. It was up to individuals to search for and present relevant papers, even outside their own speciality. (The influential key group had no neurologist, no virologist who had done research on ME, no person researching subgroups, pacing etc etc.) When I read about the apparent lack of evidence, I can't help feeling that they are really referring to the lack of evidence placed before them. Someone told me that a committee set up to invent a horse will invariably come up with a camel. Well yes, if they don't ask advice from someone who has seen a horse or an animal resembling it. If we had nothing except anecdotal reports relating to the treatment of CFS, then patients would be perfectly justified in asking us to take these seriously. But in the case of CBT and pacing, we have reasonable evidence of sufficient quality to allow us to draw tentative conclusions. Things are not as bad as the PR officer from ME association makes out. Having said that, the doctors supporting CBT also relied on the odd anecdote and a bit of speculation when it suited them (cf section on illness beliefs). This post-modernist approach to the evidence was not just restricted to patients. Dr Ellen Goudsmit
Responsibility. 5 March 2002
A P J Lake, Consultant Anaesthetist Glan Clwyd Hospital, Rhyl. LL17 0SU Send response to journal: Re: Responsibility.	Concern about Patient Power should properly centre on the issue of rights versus responsibility. It is quite in order for patients to choose a treatment option which is either not recommended or advised against but only if the consequence of a disadvantageous outcome is restricted directly to the chooser alone who, therefore, shoulders the risk. Society should not be expected to pick up the pieces but, conversely, when the following of government advice, for example, leads to a recognised disadvantageous outcome, which will always happen in a few cases, appropriate compensation should be available through a no-fault compensation system.
Irrational choices or misinformed doctors and patients? 6 March 2002
Richard Fuller, Specialist Registrar in Elderly Medicine St James's University Hospital, LS9 7TF Send response to journal: Re: Irrational choices or misinformed doctors and patients?	EDITOR – Richard Smith’s editorial ‘The Discomfort of Patient Power’ 1 raises many important and valid points regarding risk assessment and decision making by patients. We must respect patient autonomy and choice, an issue recently raised by the Secretary of State for Health, Alan Milburn in a speech to the New Health Network, who stated ‘patients have a right to be involved in their care’ 2. Smith is correct in his description of risk assessment, with its complex mix of statistical information coupled with uncertainty regarding consequences. However, when patients ask doctors for information to help them come to decisions, this is most often offered in terms of numerical probability information 3. Whilst misinformation does not necessarily result in an inappropriate or incorrect choice by patients, we must recognise difficulties in how doctors interpret this information themselves as well as its delivery and understanding by patients. The use of numerical probability information by doctors often varies due to individual interpretations of available evidence 4, and doctors themselves may misunderstand this numerical data 5. Faced with differing information from clinicians (often misinterpreted) and coupled with patients’ individual approaches to risk, it is easy to see how patients’ choices might seem inappropriate. Before labelling patient choices as ‘irrational’, we must first examine how clinicians understand probability information themselves, and whether the methods used to deliver this information to patients are effective in order to optimise patient choice. Richard Fuller Specialist Registrar in Elderly Medicine St James’s University Hospital, Leeds, LS9 7TF Ftworf@aol.com 1. Smith R. The discomfort of patient power. BMJ 2002;324:497-498. 2. Ministerial Speeches. ‘Redefining the National Health Service’ – Speech by Rt. Hon Alan Milburn MP, Secretary of State for Health – to the New Health Network, 15th January 2002. www.doh.gov.uk/speeches/jan2002milburnnhn.htm 3. Kalet A, Roberts JC, Fletcher R. How do physicians talk with their patients about risks? J Gen Intern Med 1994;9:402-4. 4. Buckholtz WM. Competent patients and irrational choices. NEJM 1990;323:1354. 5. Bryant GD & Norman GR. Expressions of probability: words and numbers. NEJM 1980;302:411.
Government reassurance is not reassuring 7 March 2002
Jay S. Cohen, Assoc prof, Family & Preventive Medicine Univ of Cal, San Diego, USA, 92093 Send response to journal: Re: Government reassurance is not reassuring	Government assurances of drug safety are not entirely reassuring to the public. "Safe and effective" are relative terms, often decided upon incomplete or biased data and via statistical anaylses that may have little meaning when an indiviual patient must take a medication (or vaccine). "Safe" drugs are linked to more than 100,000 deaths and millions of serious side effects each year in US hospitals alone. Patients know this, and aggressive marketing of drug companies and overprescribing by physicians only serve to broaden the gap between professionals and patients. Patients also understand that mixing medications -- or vaccines -- can only increase risk. I have yet to see a credible explanation about why mumps, measles, and rubella vaccines should not be given separately when requested by parents. Jay S. Cohen, MD
Power-sharing, not a take-over 9 March 2002
Peter D White, Senior lecturer in psychological medicine Barts and The London, Queen Mary School of Medicine and Dentistry, London, EC1A 7BE Send response to journal: Re: Power-sharing, not a take-over	Having declared a conflict of interest as being one of the clinicians who resigned from the working group that reported to the CMO regarding "CFS/ME" (1), I hope the following clinical anecdotes may inform this debate. Many patients who attend my chronic fatigue clinic had heard of or read the report. Many welcomed the official recognition of CFS as a discrete and "genuine" illness, having suffered years of doubt by others and also self-doubt. The down side included the negative interpretations patients took from the report regarding the mind-body relationship and getting better. One patient demanded to be referred to an immunologist since "the government said ME was physical". Two others said how depressed they felt reading that there was no cure, and doubted my previous assurance that they would probably improve significantly and possibly be cured. Several were confused that the report advised active rehabilitation therapies, such as graded exercise therapy and cognitive behaviour therapy, alongside the more passive approach of "pacing". I am absolutely convinced that doctors should enter into an alliance with their patients on equal terms, with one having more general knowledge and the other more personal knowledge of illness. Successful therapeutic relationships depend on each party sharing their knowledge. This is why I almost always send my patients a copy of any letter I write concerning them (2). Giving our patients the power of that knowledge allows them to share the responsibility of getting better with the doctor, rather than expecting passively applied medical miracles. But this is power-sharing not a take-over. Take-overs produce polemic rather than a balanced view. As human beings we already make most decisions on emotional rather than rational grounds, as shown by the MMR debate. As doctors we should present the rational and practical choices to our patients so they can use both the power of that knowledge as well as their own intuition to decide what is best for them and their families. 1. Independent Working Party. A report of the CFS/ME working group to the Chief Medical Officer. 2002. http://www.doh.gov.uk/cmo/cfsmereport.index.htm 2. White PD. Solutions to stigma: sharing knowledge with the patient (Chapter 9) In: Every family in the land: Understanding prejudice and discrimination against people with mental illness. (AH Crisp Ed) 2001 www.stigma.org/everyfamily
The discomfort of doctor knows best 10 March 2002
Roger M Goss, Director Patient Concern Send response to journal: Re: The discomfort of doctor knows best	LETTERS TO THE EDITOR 10 March 2002 The discomfort of doctor knows best. Editor – A world in which doctors’ views dominate may be disappearing fast, (1) but not nearly fast enough for Miss B. Her doctors are trying to persuade the courts to force her to accept artificial ventilation against her will. Truth as defined by medical experts is merely clinical judgment. The truth as defined by patients is how professional judgment relates to their experience of illness, their feelings, priorities and beliefs. Until doctors can bring themselves to accept that they offer advice – not the truth via a hotline to God – patients’ right to accept or decline treatment will remain observed more on paper than in practice. Roger M. Goss Director – Patient Concern (1) Smith R. The discomfort of patient power: Medical authorities will have to learn to live with “irrational” decisions by the public BMJ 2002; 324: 497- 498 (2 March)
If there were no professionals would they be reinvented? 14 March 2002
James A Cave, GP Downland Practice, Newbury RG20 8UY Send response to journal: Re: If there were no professionals would they be reinvented?	Is medicine a religion? Is it faith that decides what is best? Not anymore. The profession has more than faith. There is now a clear structure, based on scientific principles that guides our actions. I do not go to an architect and expect him to build a structure that would be unsafe, I do not go to a solicitor and expect her to act in a prejudicial way. Likewise I do not expect patients, whatever their beleif to expect me to act in a way that would harm them. This would be unprofessional and I would expect the GMC to crack down on this behaviour. If the majority of my patients thought that prescribing jojoba oil would make them live longer I would not do it unless there was evidence that it did just that, without harm. Richard Smith seems to be suggesting we move to a world where the rabble knows best, where we decide who the witch is by ducking them in the village pond. Being a professional, particularly a medical professional, at present is deeply unfashionable, largely I suspect because many of us have forgotten what it means. In a future where buildings fall down, where the is no justice and where people die needlessly because they have been treated by charlatons and quacks, perhaps the mob will reflect on the need for somebody with skills and expertise based on a broad knowledge base,somebody who provides a service based on a special relationship, one involving integrity and honesty, and somebody who is recognised as being independent and disciplined by its own body. This professional will look back and realise it was the nationalisation of the health profession that led to its downfall, and vow never to allow it to happen again. Dr James A Cave FRCGP
Patients have always had to live with irrational decisions 18 March 2002
Kathryn A Page, Patient Advocate Lower Layham, IP7 5NA Send response to journal: Re: Patients have always had to live with irrational decisions	In answer to "The Discomfort of Patient Power" [1] patients have always had to live with irrational decisions by doctors, scientists, health authorities and governments. For example: As a cancer patient I cannot see why doctors go along with the millions of pounds and dollars that are spent on toxic cancer drugs that cannot cure, and at the most extend life by weeks but at the same time make that quality of life intolerable. The only way such drugs can be termed a success is that they make money for the drug companies. I would like to see more research into the causes of cancer so that future generations do not have to put up with the spiralling incidence (breast cancer now 1:9 in 2001from 1:12 in 1995)[2]. The money government puts into research should fund this. It certainly isn't in the interests of chemical/drug companies to do so. As a patient I cannot understand why the DTI (under instruction from drug/chemical companies) can get away with putting pressure on M.E.P's to oppose a European directive to phase out more than 350 chemicals, including carcinogenic pesticides & hormone disrupters, that have been proved to remain in breast tissue and contaminate breast milk. [3][4] The same companies that make the carcinogenic chemicals and hormone disrupters also make the drugs. The public isn't stupid. Where was the outcry from doctors? You mention the arguments over the effectiveness of mammography and say that although the big money is on one side, a united patient view might eventually prevail. This presumes that if women knew all the facts they would be against mammography? Women hear what the screening program wants them to hear ie. the cost effectiveness if a high percentage of people are screened, that some false positives and negatives occur (they admit this so they are not sued) and that cancer detected early can be cured. People aren’t informed of the stress caused by high numbers of false positives and the unnecessary surgery on tumours that would never have progressed from in-situ disease. People aren't told that screening by mammography only detects about 50% of cancers (from the 2nd European Breast Cancer Conference [5]: "Figures for interval cancer diagnosis and false negative mammograms. Of cancers diagnosed since the last 'negative' screening test, half were new interval cancers, a quarter were radiographically occult, and a quarter were false negative - usually due to radiologist error"). They are not told that the squashing in mammography can rupture cysts, spread and push malignant cells out to the lymph nodes and the cumulative effect of the radiation can cause cancer. [6] What is rational about big money being on one side of such an argument? It's a factor but it should have no sway. What matters is whether screening is effective in what it is trying to achieve and that it does much more good than harm. You mention the MMR vaccine controversy as another example of irrational decisions by the public. I have heard doctors saying that it is tantamount to torture to give separate vaccines. They never said this prior to MMR. Rational? The main danger from german measles is to pregnant women, so why is it so necessary to give it to babies? Rational. On the Panorama program on the subject it was said that measles itself can cause autism and bowel disease. As both vaccines are 'live' it is the probability that this is the cause. The question should be, whether the triple vaccine is more likely to cause the problem. It should be easy to design a straight trial of the two vaccines with willing parents in the two camps. This way, parents can have the vaccine they want now, and the question will be resolved, once and for all, after a couple of years. Rational. You think that the views of patients are beginning to prevail with chronic fatigue syndrome. As Gurli H. Bagnall (Patients' Rights Campaigner, "Too many loop holes" on 18th January 2002) [7] wrote in the reply to "Recognising chronic fatigue is key to improving outcomes" by Lynn Eaton: "Given the hype, one would have assumed that all the facts had been considered, but instead we find a report that shows clear signs of being compiled by two opposing camps. It gives with one hand and takes with the other, leaving doctors who have a mind to do so, to keep ME in the yuppie flu category." The thyroid /endocrine link wasn't even discussed. The working party and report were an opportunity to do something about this debilitating condition but it was just wasted. Please don't hold it up as a wonderful example of patients' views being taken notice of. It was a good example of how lip-service is paid to patients being involved and then sidelined. As a hypothyroid patient, I find it irrational that a doctor will happily accept that a test for blood oestrogen level cannot tell you how much is being taken up by the tissues, but will tell a patient with all the symptoms of hypothyroidism that they must be OK because their TSH is within some arbitrary range and so it must be 'in their head' (…so do have an anti-depressant pill!). When you consider that TSH is a measurement of the stimulating hormone that promotes T4 production, then that T4 has to be deiodinised to T3 and adrenal hormones are needed to facilitate entry into the cell. Measuring TSH is obviously too far removed from that which it is trying to ascertain. Rational. A recent trial by Pollock et al was published in the BMJ; Thyroxine Treatment in Patients with Symptoms of Hypothyroidism but Thyroid Function Tests within the Reference Range [8]. Irrational to think up the flawed trial in the first place. Irrational that it got funding and passed peer review. Irrational that it was published by the BMJ. Pollock et al thought that 22 patients and 19 controls were enough people to prove something using tests for cognitive function and psychological wellbeing. They thought it ethical to give 100µg of thyroxine at the outset. They thought it ethical to give thyroxine to healthy individuals. They barely gave it a chance to work anyway (12 weeks). The one thing that they did find, namely that the patients with symptoms did not convert the synthetic thyroxine to T3, seems to have been forgotten. They didn't even bother to test adrenal function. For years, established hypothyroid patients (tested as out of the capricious reference ranges) have been saying that synthetic thyroxine doesn't always work well even for them. Medical profession takes no notice. Patient partnership! To make the presumption that synthetic thyroxine would be the only answer to these obviously unwell people was crass and unscientific. As a biomedical scientist I really wonder what their true agenda was. As a hypothyroid patient I cannot understand why government, local health authorities and doctors let fluoride be added to drinking water. Basic chemistry tells you that fluorine is a reactive chemical that will replace the other halogens, including the iodine in the thyroid hormone. That is why fluoride compounds can be used to treat hyperthyroidism. So how can we manage all these irrational people, patients, doctors, scientists and politicians. A starting point is; are doctors there to help patients or are patients there to create a career path for doctors and to help along multi-million pound businesses? Obviously all of these, but which has priority and to whom? What should take priority? It's obvious to me. Doctors do not always know what is best for the patient, they are not in their shoes, and it is impossible to know everything about everything. If doctors really embraced patient partnership they might not feel the discomfort of patient power and they just might learn something. Kathy Page, AIBMS. (Retired biomedical scientist, patient advocate for a breast cancer charity and a thyroid charity, and obviously part of the rabble that Dr Cave talks about [9]). References [1] The Discomfort of Patient Power. Richard Smith. BMJ 2002;324:497-498 (2nd March) [2] CRC website, 2001. [3] The EU White Paper http://europa.eu.int/comm/enterprise/chemicals/chemp ol/whitepaper/whitepaper.htm [4] Ban of chemicals in breast milk defeated By Geoffrey Lean, Environment Editor, Independent on Sunday, 25 November 2001 [5] Highlights of the 2nd European Breast Cancer Conference, September 26-30, 2000. Brussels, Belgium. www.medscape.com [6] Womens Health. Dangers and unreliability of mammography: Breast Examination is a safe, effective and practical alternative. International Journal of Health Services, Vol 3, No 3, p605-615, 2001 Samuel S. Epstein, M.D. et al, Professor Emeritus Environmental and Occupational Medicine, and Chairman, Cancer Prevention Coalition, University of Illinois at Chicago, School of Public Health. [7] Gurli H. Bagnall (Patients' Rights Campaigner), Too many loop holes. 18th January 2002, in the reply to "Recognising chronic fatigue is key to improving outcomes" Lynn Eaton BMJ 2002; 324: 131 [8] Thyroxine treatment in patients with symptoms of hypothyroidism but thyroid function tests within the reference range: randomised double blind placebo controlled crossover trial. M Anne Pollock et al. BMJ 2001;323:891-895 (20 October). [9] If there were no professionals would they be reinvented? James A Cave bmj.com, 14 Mar 2002. One of the electronic responses to: The discomfort of patient power, Richard Smith 2002; 324: 497-498. http://bmj.com/cgi/eletters/324/7336/497#20538
Taking issue 30 March 2002
Gul Bano, Clinical Research Fellow St George's Hospital Medical School, London SW17 0RE, Taking issue Send response to journal: Re: Taking issue	Sir: We take issue with aspects of your ‘postmodern’ view in the editorial ‘The discomfort of patient power’1 (March 2nd 2002). Clearly (as expounded so eloquently by philosophers such as Karl Popper and Michael Polanyi) all knowledge is personal and treatment selection is indeed much more consumer driven than in the past. It is wise, however, to remember that patients may choose to ignore their doctor’s advice not only because of patient autonomy and power but a sheer lack of understanding of what power and autonomy means. Emphasizing that ‘Patients come first and are free to make silly choices’ is to ignore the fact that some may not be truly free to make choices silly or otherwise. We may illustrate this with an example from our practice in an inner city area with a large ethnic minority population. British Asians, who have four times higher prevalence of type 2 diabetes than Caucasians2, have been shown to have poorer glucose control, awareness of diabetes management and knowledge of complications. There are multiple reasons for this and problems with communication and health and cultural beliefs held by Asian patients are important. Several studies have investigated factors that influence patients’ attitudes. Dietrich et al. suggested that physician attitude at the time of diagnosis was critical in patients’ attitudes about the seriousness of diabetes and patients’ subsequent self -management behaviour 3. Hunt et al. found that the patients’ attitudes towards insulin therapy were influenced by a patient’s interaction with health professionals as well as personal experience and observation4. Many of the first generation South Asian diabetic patients whose disease has progressed with time to requiring insulin have poor English and are steeped in traditional culture. These are significant barriers to good control and effective understanding of the disease. In these patients, the doctor is still seen as ultimately responsible for making any decision regarding the treatment of their disease. Negotiation regarding the choices of treatment can be misinterpreted as lack of a definitive decision on the part of the doctor and the disease not being sufficiently serious to warrant insulin therapy. Older women especially are at a greater disadvantage in not understanding the treatment selection because of traditional unassertiveness in a male dominated culture. Under these circumstances we would argue that it is culturally appropriate for the physician to make an assertive decision for the patient without going into the detailed pros and cons of different treatments. References: 1. Richard S. The discomfort of patient power. BMJ 2002; 324: 497-8 2.Mather HM, Keen H. The Southall diabetes survey: prevalence of known diabetes in Asians and Europeans. BMJ 1985; 291: 1081-4 3.Dietrich UC. Factors influencing the attitudes held by women with type II diabetes: a qualitative study. Patient Educ Counsel 1996; 29: 13-23 4. Hunt LM, Valenzuela MA, Pugh JA: NIDDM patients’ fear and hopes about insulin therapy: the basis of patient reluctance. Diabetes Care 1997; 20: 292-98. Gul Bano, MRCP. Clinical Research Fellow. gbano@sghms.ac.uk Stephen Nussey, Dphil, FRCP. Reader in Endocrinology. s.nussey@sghms.ac.uk St George’s Hospital Medical School, Cranmer Terrace, London SW17 0RE.
Is science a superior form of knowledge? 10 June 2002
Richard Smith, Editor BMJ Send response to journal: Re: Is science a superior form of knowledge?	Is science a superior form of knowledge to all other, with the implication that scientists know more than others? This philosophical debate takes on an everyday form in the argument over whether parents should be offered for their children only MMR (measles, mumps, and rubella) vaccine or should be given the choice of single vaccines. Most scientists argue that the evidence that MMR is unsafe is very weak and that offering parents a choice of single vaccines would reduce uptake and make cases of natural infection more common. Parents should thus be offered only MMR vaccine for their children. This is the orthodox view, which is supported by the BMJ. I argued in an editorial that whether we liked it or not we now live in a postmodern world where all forms of knowledge are in some sense equal. (1) As a consequence the British government might have to offer parents a choice of single vaccines even if science and scientists did not support such a development. Many correspondents were upset that I seemed to be so supine in accepting the postmodern view. Today, reading David Lodge's new novel "Thinks", I've come across a strong argument for science being a superior form of knowledge. (2) "Thinks" is a highly readable and enjoyable--if somewhat contrived--novel about "the problem of consciousness." Is there mind and brain or is mind simply a subset of brain? Lodge is what might be called an old fashioned professor of English and is perhaps scornful of "postmodernists, or poststructuralists, or whatever these people call themselves." "Since the Enlightenment science has established itself as the only true form of knowledge. This has created a problem for rival forms--they've either had to take it on board, try to make themselves scientific, and run the risk of discovering that there's no foundation to their conceptual world--like serious theology, for instance--or put their heads in the sand and pretend that science never happened--like fundamentalist religion. "These postmodernists are mounting a last ditch defence of their disciplines by saying that everybody is in the same boat, including scientists--that there are no foundations, and no sand. But it's not true. "Science is for real. It has made more changes to the conditions of human life than all the preceding millennia of our history put together. Just think of medicine. Two hundred years ago doctors were still bleeding people for every ailment under the sun. If you had cancer, would you consult a postmodern oncologist who thought reflexology and aromatherapy were on a par with surgery and chemotherapy?" I stand, however, by my argument. Ultimately it was not a philosophical but more a sociological and political one. The extension of democracy and populism seems to mean that elitism in general and science in particular are suspect. Science is also handicapped by dealing always with provisional truths, meaning that the orthodoxy is always overthrown--and so was perhaps in the popular mind "wrong." Science has also suffered by being adopted by politicians, a group of people who are trusted less than any other. The result of these forces are that science is--in reality if not in theory--just another way of knowing and not necessarily a superior one. Richard Smith, Editor, BMJ 1 Smith R. The discomfort of patient power. BMJ 2002; 324: 497-8. 2 Lodge D. Thinks. London: Penguin, 2002.
Re: Is science a superior form of knowledge? 11 June 2002
A Chaudhuri, Clinical Senior Lecturer University of Glasgow Send response to journal: Re: Re: Is science a superior form of knowledge?	First Trollope, then Illich, and now Lodge has become the the flavour of the month for the BMJ. Careful readers of the history of medicine would worry less about the current practice of unorthodox medicine. Medicine has many tunes and many may sing them (1).The challenge to medicine at the beginning was to successfully treat life threatening, acute diseases. This has been largely achieved and no "post-modernist" would use reflexology or aromatherapy to treat acute bacterial meningitis or acute myocardial infarction. The unorthodox approach in medicine is essentially restricted to chronic ailments. Alternative therapies have become popular not because of a desire to be "post-modern" but because the "science" of mainstream medicine has done little to help patients with chronic ailments. "Everyone is aware that scientific medicine has not proved successful against lethal diseases such as cancer, many chronic conditions like arthritis, and other severe symptoms, most recently M.E... Curative interventionist medicine has played a modest part in shaping wider morbidity and mortality patterns within the community, but in terms of its professed aims- the greatest health of the greatest number-the olympian verdict must be that such medicine has been off target...The atmosphere is of hollow conquest" (1). Equally important is the recognition that in chronic conditions, the experience of patients in coping with their symptoms may be as relevant as the physician's orthodox advice. The boundaries of lay and professional competence in managing chronic diseases are not rigid and this principle is well accepted within the health service ("The Expert Patient"). Medicine has never been a perfect science, especially in areas where knowledge base remains incomplete. Science of medicine is influenced by contemporary knowlege (or the lack of it); there is no such thing in reality as "post-modern" medicine. I have pondered more than once whether the science has been right for the medical therapy in offer for some of the patients we see in practice. However, where the science is good and undisputed (e.g. antibiotic treatment for bacterial meningitis or thrombolysis in acute myocardial infarction),then it is, indeed, the superior knowledge to provide the greatest benefit to mankind. Reference: 1. Porter R. The greatest benefit to mankind. London, Harper Collins, 1997.
Challenging our scientific expertise? 13 June 2002
Alain M Vadeboncoeur, Head, Emergency Medicine Montreal Heart Institute, 5000 Bélanger E., H1T 1C8, Montreal, Quebec, Canada Send response to journal: Re: Challenging our scientific expertise?	To the Editor Smith [1] interesting paper is also related to our scientific expertise and the trust our patients put in it. It’s certainly not a surprise to see that this trust is now eroding. Although he suggests many reasons why this trust is now challenged, Smith doesn’t mention the weakness of physician’s scientific expertise itself. Do we, as clinicians, really have a good scientific expertise? Where this expertise would come from? Did we train that way? Science training is not the learning of scientifically based ideas, it’s to become skilled in a critical thinking process applied to medical concepts. Most of the teaching and learn of clinical medicine we had don’t have much to do with true science, apart for those of us actively involved in research. In the 80, when I learn medicine, did I learn to think scientifically? I learned instead a myriad of concepts, which certainly originated from science but were then separated from the scientific process they come from and viewed now as pure facts -- "truth". Did I learn to doubt these concepts? I mostly learn that everything written or said by my teachers was pure truth. Did I learn to doubt about my own ideas? I mostly learn that the words from a doctor’s mouth were pure truth. Do my patients help me to critically think about these notions? They sadly but generally think that my mouth's words are pure truth, somewhat in a religious way. Is that science? So why be surprised now that many patients don’t put much faith in our “scientific expertise”? I would guess that, many years from now, doctors were the most solid scientific references for the population. That was in a time where writing and reading was only for a few minorities. At that time, medicine has not much to do with science. At that time, the father of my grandfather was a very active rural physician and probably did much good for many people. I see now in the university faculty that learning of medicine is based on McMaster University (Hamilton, Canada) and others "problem oriented" ways. True "critical thinking" is more involved there. I'm not sure that it will lead later to a more "scientific" way to practice medicine, but for sure, at least it show early to future physicians that medicine is not just to know things, it's to think critically about these things. But may be it's just not easy to be someone that must decide and take hard decisions and being at the same time very critical about many so many of these decisions? Could it be, finally, that you shouldn't be too scientific to be able to really care patients? Alain Vadeboncoeur MD Emergency Physician Montreal Heart Institute, Canada Ref. Smith R. The discomfort of patient power. BMJ 2002; 324: 497-498
Rain dancing and public health 18 June 2002
John Hopkins, GP Parkplace Health Centre Darlington DL1 5LW Send response to journal: Re: Rain dancing and public health	Dear Dr Smith, When early missionaries came back to Victorian England with tales of tribal magic, Sir James Frazer, author of The Golden Bough, regarded these beliefs as attempts by a child-like mind to understand nature (1). Frazer did most of his writing at home but a later generation of anthropologists went out and lived with the tribes they were studying. They found practical and intelligent people who didn’t expect it to rain because they threw water in the air. The magic was important because it allowed them to sustain confidence in a world of uncertainty. To understand the dance, it was necessary to see the whole thing in its proper context. As you say, the same can be said of western science. It is consoling and consistent and not all of it is entirely rational. Theories of everything and accounts of the beginning of time, arguably teeter on the brink of conceit. However, the difference between science and other world views is in its effects. For better and for worse. Without technology there would probably be no global warming. There would have been no Hiroshima and no Auschwitz. And, without science, we would be living in a world without surplus food, clean water, electricity and anaesthesia. And there is the rub. Because, perhaps medicine’s greatest challenge is not the balance of power between doctors and patients in European and North American cities. It is how to address the fact that over 800 million people don’t have enough to eat. Speaking on Channel 4 News the other evening the Ugandan High Commissioner put the problem in pragmatic terms. The countries of sub Saharan Africa need irrigation, high yielding crops and grain silos. Making sure they get these things is surely the proper task of a global public health. Yours sincerely, Dr John Hopkins (1) Clifford Geertz in States of Mind edited by J Miller BBC 1983
Sharing information is good patient care 28 October 2002
Barbara J Boucher, Hon Senior Lecturer, Diabetes & Metabolic Medicine Hon. attachment as above, Royal London Hospital, London E11BB Send response to journal: Re: Sharing information is good patient care	EDITOR- Illuminating as the correspondence has been on patient power there is one aspect of sharing knowledge and care plans made at 'out- patient' consultations that has not been mentioned. Whilst White reports benefits from copying letters about patient care to the patient there is another way. For perhaps 30 years I have made a point of asking patients, whether at first or subsequent consultations, if they would like me to write directly to them. Very few refuse this offer. I have then written back outlining findings, treatment, reminders about the effects /side effects of treatment and plans for follow up if required and what to do in the light of various responses to treatment including who to contact. This I have copied to the referring doctor using a PS for the transfer of technical details or specific reservations or worries as required. Many GPs have told me that this was unusual but none has ever complained! There were some situations where this was an unsuitable approach, usually when patients had had to be admitted urgently. I, like many others, know that I have on many occasions made a poorer job of communication than was needed but none that relate to this system of sharing information. Only when Diabetes care services, including letter writing, were rigidly computerised was this interupted. However, writing the letter to the referring doctor together with the patient and printing a copy to take home, if wanted, overcame the loss of flexibility. Barbara J Boucher. Hon Senior Lecturer, Diabetes & Metabolic Medicine Barts and The London, Queen Mary School of Medicine & Dentistry, Royal London Hospital, London E11BB 1. Smith R. The discomfort of patient power. BMJ 2002;324:497-8. (2 March) 2. White PD. Power sharing is not a takeover bid. BMJ 2002;324:1214