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Rapid Responses: Rapid Responses published:
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Reformation and freedom of information
- Karol Sikora (23 March 2009)
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Re: Reformation and freedom of information - clarity required around older people comment
- Nigel Dudley (25 March 2009)
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Martin Luther's Protestant Reformation as a retrospective mirror for the present Internet Revolution
- Felix ID Konotey-Ahulu (27 March 2009)
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More reforming needed
- Adam W. Clark (28 March 2009)
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Young people are leading the reformation
- Richard Smith (29 March 2009)
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Medical (information) reformation
- Hugh van't Hoff (24 April 2009)
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Karol Sikora, medical director London W1U 1BD
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This is absolutely spot-on. Even as a child the catholic church had the upper hand on information. I was an altar boy and could scarcely follow the Irish Latin used. Medicine has its own language. The time has come to create a reformation here too. As costs of healthcare escalate out of all proportion - especially amongst older people - only a full understanding of the issues involved can take us forward. In my area of oncology, we readily tell people they have cancer but are a little less forward about the consequences. The time has come to be bite the bullet. We need to share information honestly with our patients. Tyndall got burned at the stake for his efforts - this won't happen now. Competing interests: None declared |
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Nigel Dudley, Consultant in Elderly / Stroke Medicine St James's University Hospital, LEEDS. LS9 7TF
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Exactly what does Professor Sikora mean when stating "As the costs of healthcare escalate out of all proportion - especially amongst older people ...."? Is this a suggestion that older people are having more than their fair share of the NHS cake or that these resources are being wasted on older people that would be far better spent on his younger cancer patients so that they can have access to the latest drugs even sooner than NICE now permits? There is only a limited pot of money in the NHS, as Andrew Dillon and NICE keep trying to point out. Elbowing older people aside by suggesting that spending on them is "out of all proportion" - presumably for what is or can be achieved - would seem to be rather ageist. Perhaps I have misnterpreted what Professor Sikora was stating about the escalation of healthcare costs and older people but his comment does merit further and clearer explanation. I would completely agree with Professor Sikora's view that there is a need to share information honestly with patients, preferably in a form that is not framed by doctors so as to put minor survival benefits in the best possible light. Competing interests: None declared |
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Felix ID Konotey-Ahulu, Kwegyir Aggrey Distinguished Professor of Human Genetics University of Cape Coast Ghana Consultant Physician Genetic Counsellor in Haemoglobinopathies 10 Harley Street London W1G 9PF
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Martin Luther’s Protestant Reformation as a retrospective mirror for the present day Internet Revolution Joanne Shaw’s priceless Personal View of 21st March [1] is most welcome. We doctors can no longer claim a monopoly of theoretical medical knowledge. The internet is full of excellent information that is available to everybody. Information exists even on foods with medicinal properties not unlike the discovery that eating oranges cured scurvy. A few patients have more than once given me useful information that is not available in textbooks, and pointed me to side effects seen “on the net” that have not yet been mentioned by manufacturers. INTERNET PERMITS QUICK CORRECTION OF WRONG INFORMATION The success of the internet can, however, easily blind us to the fact that real error can be placarded as fact. This is not the internet’s fault, but it can be ours if we do not recognize that published error can as easily be corrected almost as soon as it is posted. If this is not a revolution of the Reformation dimension that Joanne Shaw refers to I do not know what is. One example will suffice. My Mother Tongue is the Ghanaian tonal language Krobo/Dangme-Gă, so I am an authority on it. When I read on the net “Gă has two tones, Dangme three” I knew immediately that it was incorrect, for Gă has 3 obligatory tones ‘high, mid, and low’ [References 2, 3, 4] plus two decorative tones all 5 of which can be identified on the piano. The Gă for “She/he/it will emerge from there” is “Ee pue kε jε jεmε” with an octave between the first two vowels (low high), the next vowel, u, is the same high pitch, followed by the next two vowels that are exactly 3 semi-tones below the pitch of the u [2, 3, 4], and the subsequent 2 vowels dropping exactly 2 semitones before the last vowel which also drops a further 2 semitones [5]. Get a native speaker, strike the piano keys exactly as indicated above, and the native will recognize the phonation of “she will emerge from there” in the Mother Tongue. The conventional vague terminology of “down-stepping” or “terracing” of the voice pitches has now been identified “quantitatively” as semitones, which is an enormous progress in Tonal Linguistics. The way this information has been disseminated to correct error would have been virtually impossible so quickly without the internet revolution. In the clinical situation, I have pointed out on the world-wide web, how cleft palate in African babies needs to be prevented (with Folic acid in pregnancy) or corrected soon after birth to avoid the social pathology that the child will be exposed to as the pronunciation of a word like ‘sa’ intended to mean ‘scrub’ will sound like “pass wind” with cleft palate [5]. If an African pregnant woman approaches her GP demanding a prescription for Folic acid it is because she has read this information “on the net” and her doctor had better oblige. OTHER REVOLUTIONARY INTERNET INFORMATION My Mother Tongue Krobo/Dangme has the same phonetics as Japanese. “Nihongono”, which is Japanese in Japanese, when hummed, sounds exactly like “E ji lolo” in my language, meaning “She has not yet left” [4], with “ngono” and “lolo” suspended in mid pitch, thus displaying the mid pitch arrest phenomenon [4]. The internet has revealed that I am more tonally related to the Japanese than can be imagined. But the most fascinating information in Glossogenetics I have deduced recently is the fact that our griots’ oral tradition is correct when they said we in Ghana migrated from Mizraim [Egypt and Sudan] many centuries ago, and that we were part of the ancient Egyptians; the proof being that Hieroglyphics [6] have now revealed certain words like “ekoo” which is the word for the “playfully coloured parrot, said to possess unusual skills of eloquence” as the very same word used by ancient Egyptians and which now identifies the bird “from the Atlantic coast of Ghana all the way to the Senegal river” [7]. Phonated “e ko o” (high low high) in Fantse, it is “a ko o” in Akuapem, Akyem, and Ashanti with the same pitch sequence, and in the Krobo/Dangme- Gă and Ewe tribes it is “a ko o” pronounced with a “high mid mid” sequence, the mid pitch being exactly 3 semi-tones below high pitch. Should thousands of years not denature the genome of Egyptian mummies, it would be an easy matter by DNA sequencing to see how related I was to those ancients who called the parrot by the same name as my fellow tribes folk. This information revolution was unimaginable a few decades ago when there was no internet. DOCTORS PLEASE GET ACQUAINTED WITH THE INTERNET Joanne Shaw’s advice needs taking seriously: “People who look to the internet as a legitimate tool to help them with their health may already be in the majority, and this is something for us to celebrate”. Of course, there are pluses and minuses to the internet, and doctors who see only minuses will not be celebrating. But I am convinced the pluses far outweigh the minuses. Doctors who, with smug indifference, let the internet revolution pass them by remind me of one of the first English sentences my father taught me when I was seven years old. “He who does not know, and does not know that he does not know, is a fool”. Felix I D Konotey-Ahulu MD(Lond) FRCP(Lond) FGA DTMH(L’pool) Kwegyir Aggrey Distinguished Professor of Human Genetics, University of Cape Coast, Ghana and Consultant Physician Genetic Counsellor in Sickle and other Haemoglobinopathies, London W1G 9PF felix@konotey-ahulu.com 1 Shaw Joanne. A Reformation for our times [Personal View]. BMJ 2009; 338: b1080 (21 March 2009, page 710) 2 Konotey-Ahulu FID. MOTHER TONGUE: Introducing The Tadka Phonation Technique For Speaking An African Tonal Language Krobo/Dangme-Gă of South- East Ghana. Tetteh-A’Domeno Company (T-A’D Co), Watford, England, 2001. ISBN 0-9515442-4-1 3 Konotey-Ahulu FID. African American Museum In Philadelphia Award Lecture: The Remarkable African Ear - Phenomenon of Mid Pitch Arrest in Krobo/Dangme-Gă Tonal Languages of South East Ghana. 19 May 2007. http://www.modernghana.com/news/136069/1/african-american-in-philadelphia- award-lecture.html 4 Konotey-Ahulu FID. Black people’s red faces and AIDS prevention. Lancet 2000; 355: 1559. 5 Konotey-Ahulku FID. Social pathology of cleft palate in the African: mathematical precision of pitch gaps in tribal tonal linguistics. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2631266 Ghana Medical Journal 2008; 42: 89-91 6 Lam AM and Armah Ayi Kwei. Hieroglyphics for Babies – A Children’s Primer on Ancient Egyptian Writing – illustrated in full colour, 1997, 32 pages. PER ANKH Publishers, Popenguine, Senegal. . 7 Armah Ayi Kwei. The Eloquence of the Scribes. A Memoir on the Sources and Resources of African Literature. PER ANKH Publishers, Popenguine, Senegal, 2006, page 191. Conflict of interest: None declared Competing interests: None declared |
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Adam W. Clark, Librarian Ian Potter Library, Alfred Hospital, Melbourne 3004
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I think Joanne Shaw's use of the Reformation as an analogy of medical information on the Internet is really interesting. However a difference occurs to me, that is the ordinary people during the Reformation received the top religious information resource, ie the Bible. Translated into the spoken language, printed and sold at a reasonable price. On the Internet currently, today's ordinary folk only can access a mishmash of medical information, some good, some bad. It must be admitted that most of the "Canon" used by doctors is still not available due to price. Competing interests: None declared |
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Richard Smith, Editor Cases Journal, London WC1
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I described this excellent article to my wife and 25 year old son, and he then told us about how his friends regard GPs. His story surprised me. He started by saying "I'm always having to defend GPs to my friends." Evidently whenever they have a problem his friends self diagnose using Google. They then go the GP, tell them what they've got, and ask for what they know to be the treatment. Their GPs--understandably to me--are reluctant to just prescribe the treatment or make a referral. They want the young people to describe their symptoms and discuss the possible diagnoses. This, my son tells me, infuriates his friends. My son then said: "Of course, I do the same self diagnosis using Google, but I know you have to be more subtle with GPs. I ask the GP whether it might possibly be x, and he or she then has the satisfaction of saying I could be right. They are like temperamental fish, these GPs. You've got to play them." Competing interests: I know and admire Joanne. |
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Hugh van't Hoff, GP and Educator GL11 4JN
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Of course the analysis of the current divide between the
haves (medically trained) and the have-nots (everyone
else) in your article is right BUT only as far as it goes.
I'm struck by two sentences - "we need people to be more prepared to take responsibility for their health....." & "the internet does not diminish the role of doctors but casts them as expert advisers rather than authoritarian figures with exclusive guardianship of special knowledge". These two sentences aptly encompass the two main themes of the project I'm working on to promote a better understanding of illness by children in order to help them deal with risk in general (and specifically in making choices based on a better understanding). The themes understanding and assessing risk and breaking down medical 'hegemony' are vital if we are to empower the general population - but are generally anathema to the medical profession. I am working with my local PCT, county education authority, university and secondary school to push these ideas (see www.facts4life.org -> downloads for more pdf files) but I face an uphill struggle against medical indifference and an over-full curriculum in schools. My idea is radical (in the best tradition of the reformation) and, 'taken neat', proposes one of the biggest changes in teaching for a century at least. But the ideas and principles that need teaching are not new - surprisingly - they are, though, effectively witheld form the public by the medical profession and would need some work to re-package for schools. However, we don't need to re-invent the wheel - it's all out there and easily understandable by young kids - I've tried it in surgery, in secondary school and with my kids. In order to make any sense of the plethora of data that's out there people need some guiding principles - the govt recently pushed the idea of a 5 yearly 'MOT' but hasn't provided anyone with the equivalent of driving lessons or an atlas. Properly managed, the introduction of the study of illness (the complete facts of life vs. just sex ed and a bit more) would provide a portal through which the traditional sciences would take on new meaning. We could use the body in illness and health as the new laboratory. In future patients could have some of their follow-up conducted in schools as a learning vehicle - imagine heart follow-up clinics in schools with ECHO visualisation of the working heart and then a lesson on the physics of pumps, say. It's not so far fetched and, with patients becoming increasingly happy to talk about their illnesses it could work well. See what you think about the site and the enclosed pdf file. I think you'll see my ideas are in tune with yours or even somewhat ahead of them!! Competing interests: None declared |
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