Letters Information on the internet

Should clinicians edit Wikipedia to engage a wider world web?

BMJ 2012; 345 doi: https://doi.org/10.1136/bmj.e4275 (Published 03 July 2012) Cite this as: BMJ 2012;345:e4275

Re: Should clinicians edit Wikipedia to engage a wider world web?

Should clinicians edit Wikipedia to engage a wider world web? At least two examples of inaccuracy dictate caution.

Wikipedia’s medical initiative [1] has produced useful information to a multitude, but I completely agree with Matiram Pun when he said “Incomplete and inaccurate information is far more dangerous after all” [2]

First Example: Graham Serjeant [3] in the West Indies and I in Ghana [4] have personally seen, examined, and treated more patients with sickle cell disease (scd) in painful crisis (numbering thousands) than anyone else in the world. We both repudiate Morphine and Diamorphine in treatment of these patients because they tend to die on these drugs as the United Kingdom’s NCEPOD Report confirmed [5]. In the USA Morphine is used, but Diamorphine is not [6]. In the UK both Morphine and Diamorphine are recommended by the National Institute of Clinical Excellence (NICE) [7]. So when patients and their relatives, medical students, nurses, and doctors turn to Wikipedia for information does what they get not depend on whether the “Expert” editing the information comes from the UK, USA, or Ghana/West Indies?

Second example: There is no Linguistics Expert in the whole world who understands the Tonal Linguistics of my Mother Tongue as accurately as I do. So turn to Wikipedia and find out how many pitches there are in the spoken language of the Krobo/Dangme-Gã tribes people and you will get, as Matiram Pun puts it “incomplete and inaccurate information” [2]. It was left to me a Krobo tribesman to state categorically and accurately that our vowels can be pronounced in 10 (yes ten) reproducible ways. This feat is unachievable by Europeans but they are the ones most likely to be editing Wikipedia with respect to my Mother Tongue. Ask them to explain how the letters ‘a’ and ‘f’ in the Gã Language of Southeast Ghana can be used to form not less than 72 words, sentences and phrases that a 4 year old Gã child will understand [8] and they will not have a clue. How can they help Wikipedia stress that in the Clinical Dimension cleft palate constitutes such a colossal social pathology as is quite incomprehensible to the European ear? [9] And that just a small dose of Folic acid during pregnancy can prevent that tragedy? [9]

The real problem with Wikipedia is that various interest groups will continue “correcting” others with contrary information. If people turn to Wikipedia to find out whether they should have PSA done after the age of 45 years or not, which opinion will prevail? Neither Graham Serjeant nor I would be inclined to take the opinion of “Cohort Studies” in the USA regarding monthly blood transfusions for sickle cell anaemia patients, strong opiods for painful crises, and daily Hydroxyurea for life, yet those editing Wikipedia would hardly agree with us. Because we have looked after scd patients from kindergarten to university and helped them become Achievers without using blood transfusions, Hydroxyurea, Morphine or Diamorphine we know that “informed opinions” from the NIH in the USA and NICE in the UK do not match up to our experience. Indeed Albert Einstein College of Medicine’s Professor of Medicine and Haematology Helen Ranney has admitted that much [10]. When NIH or NICE can begin to produce Sickle Cell Disease Achievers who have become bread winners and are not depending on Welfare, then that is the time to consider their patient management Guidelines and Guidance of equal value to ours.

Wikipedia may be the excellent resource for informing the world of the exact length of an archipelago at low tide in one part of the world, but it is hardly the place to turn to for accurate information on how to make a sickle cell disease patient rely less and less on hospitals or how many reproducible ways an African vowel can be pronounced correctly.

Felix I D Konotey-Ahulu MD(Lond) DSc(UCC) FRCP(Lond) FRCP(Glasg) DTMH(L’pool) – Kwegyir Aggrey Distinguished Professor of Human Genetics, University of Cape Coast, Ghana and Consultant Physician Genetic Counsellor in Sickle Cell and Other Haemoglobinopathies, Phoenix Hospital Group, 9 Harley Street, London W1G 9AL.

felix@konotey-ahulu.com or felix@sicklecell.md Web: http://www.sicklecell.md

1 Kint M, Hart DP. Should clinicians edit Wikipedia to engage a wider world? BMJ 2012. 345, e4275 [doi: 10.1136/bmj.e4275] http://wikipedia.org/wikipedia_talk-MED

2 Pun Matiram. Wikipedia editing by Clinicians: This is not the solution. BMJ Rapid Responses 8 July 2012 www.bmj.com/content/345/bmj.e4275?tab=responses

3 Serjeant GR. Sickle Cell Disease Oxford University Press (Second Edition) 1992. Oxford. (632 pages)

4 Konotey-Ahulu FID. The Sickle Cell Disease Patient. Natural History from a clinico-epidemiological study of the first 1550 patients of Korle Bu Hospital Sickle Cell Clinic. 1991/1992 The Macmillan Press Ltd, London and TA’D Co 1996, Watford, Hertfordshire WD17 3ZH Watford (645 pages) [Pages 469 to 517 contain 133 Illustrative Case Histories indicating that not once was Morphine or Diamorpjhine given for pain. An iv drip before a pain killer never failed to cutail severity of pain]

5 NCEPOD (National Confidential Enquiry into Patient Outcome and Death). Sickle: A Sickle Crisis? (2008) [Sebastian Lucas (Clinical Co-ordiantor), David Mason (Clinical Co-ordinator), M Mason (Chief Executive), D Weyman (Researcher), Tom Treasurer (Chaifman) info@incepod.org

6 Ballas S K. Sickle Cell Pain. IASP Press. Seattle, USA, page 168

7 Gillis VL, Senthinathan A, Dzingina M, Chamberlain K, Banks K, Baker MR, Longson D [Guideline Development Group]. Management of an acute painful sickle cell episode in hospital: summary of NICE guidance. BMJ 2012; 344: e4063 [doi:101136/bmj.e4063]

8 Konotey-Ahulu FID. Tonic Solfa Is The Foundation Of Tonal Linguistics [Supplement to] DRUMSPEAK – International Journal of Research In The Humanities. New Series Volume 3, No 1, May 2010. The Faculty of Arts, University of Cape Coast, Ghana (43 pages) http://bit.ly/bEdcc4

9 Konotey-Ahulu FID. Social pathology of Cleft Palate in The African: Mathematical Precision of Pitch Gaps in Tribal Tonal Linguistics. Ghana Medical Journal 2008; 42: 89-91 (June 2008b). PMD: 19180210 [PubMed- -indexed for MEDLINE]

10 Ranney Helen. “There is no single clinical experience in the United States comparable to that of Dr Konotey-Ahulu” In Summary of Symposium on Sickle Cell Disease – Diagnosis, Management, Education, and Research – In Sickle Cell Disease, Editors H Abramson, JF Bertles, Doris Wethers (C. Mosby Co) 1972, page 320

11 Konotey-Ahulu FID. Sickle Cell Disease In Successive Ghanaian Generations For Three Centuries (Manya Krobo Tribe). In The Human Genome Diversity Project: Cogitations of an African Native. Politics and the Life Sciences (PLS) 1999, Vol 18: No 2, pp 317-322. [Invited Commentary on Professor David Resnik's article: “The Human Genome Diversity Project: Ethical Problems and Solutions”] PMID: 12561789 [PubMed – indexed for MEDLINE] The named patients are marked ‘R’ denoting hereditary cold season ‘Rheumatism’ on this: http://www.konotey-ahulu.com/images/generation.jpg or http://www.sicklecell.md/images/generation.jpg

Competing interests: Competing interest: I am one of my parents’ 11 children 3 of whom had sickle cell disease so I constantly probe how sickle cell disease patients are managed or mismanaged. We have traced the hereditary ailment in my forebears generation by generation back to 1670 AD http://www.konotey-ahulu.com/images/generation.jpg [11]

14 August 2012
FELIX ID KONOTEY-AHULU
Dr Kwegyir Aggrey Distinguished Professor of Human Genetics University of Cape Coast, Ghana
Consultant Physician Genetic Counsellor in Sickle Cell and Other Haemoglobinopathies
9 Harley Street, Phoenix Hospital Group, London W1G 9AL
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