Re: EVIDENCE - Do not forget the hidden human dimension
EVIDENCE – Do not forget the hidden human dimension
The word “evidence” occurs 121 times on 3 successive pages of BMJ 27 July 2019 from Professor Holger Schünemann and colleagues  indicating how important a word it is. Not enough is made of the fact that whether as “research evidence” or “expert evidence” evidence is mediated through humans. The Latin Conjugation derivative of the word says it all – video (I see), videre (to see), visi (I have seen) or, put differently, I witness, to witness, I have witnessed. Evidence that something has happened must always have a human interpretation. Margaret McCartney describes us humans correctly when she mentions “seams of multiple misinformation” in her excellent article “Evidence in a post-truth world” .
Clare Dyer also revealed that “Journal Agrees to retract paper after university found study was never done”.  To put it bluntly then, scientific liars and lying scientists exist who are capable of producing research evidence and expert opinions. Indeed, the word “evidence” (especially when preceded by “scientific”) not only assumes an importance it hardly deserves, but also that when used negatively can be made to turn truths upside down: For example “There is no scientific evidence that Felix I D Konotey-Ahulu was born on a Saturday, the second son of his mother”  has been interpreted to mean “There is evidence that Felix I D Konotey-Ahulu was NOT born on a Saturday, the second son of his mother.” As Professor Edward Ernst eloquently put it “Absence of evidence is not evidence of absence”.
HISTORICAL EVIDENCE CAN SUCCEED WHERE SCIENCE TOTALLY FAILS
Get the best scientific brains in the world to use Science to prove that I was born on a Saturday, the second son of my mother, and they will fail. But talk to an illiterate adult in my Krobo Tribe in Ghana and within 30 seconds the answer will emerge . For elucidation of certain truths History is far superior to Science . If this fact does not make worshipers Science a little humble, I do not know what will.
PROFESSOR LORD SOLLY ZUCKERMAN’S ADVICE TO SCIENTISTS
In his William Randolph Lovelace II Memorial Lecture, which all scientists must read, “Pride and Prejudice in Science” , Lord Zuckerman FRS exposes as fraudulent work that had been presented as scientific evidence. BMJ’s own past editor Dr Stephen Lock and Frank Wells edited a 202-page excellent book “Fraud and Misconduct in Medical Research” that should be required reading in every university. . Could not the mention of “evidence” 121 times in a 3-page article have made Professor Schünemann and colleagues include some of the concerns of Lord Zuckerman and Dr Stephen Lock? Limiting evidence to just “research evidence” and “expert evidence” omits human meddling.
FALSE DICHOTOMY BETWEEN RESEARCH EVIDENCE AND EXPERT EVIDENCE
Because of their outstanding research work 10 eminent researchers were assembled by the WHO to compile Guidelines in Haemoglobinopathy . Never was it thought that these members of WHO’s Expert Advisory Panel in Human Genetics were unsuitable because their “research evidence” could be at odds with their “expert opinions”. No, what was always problematic was when flawless evidence such as Richard Doll’s University of Oxford work in the 1950s and later which linked smoking to lung cancer  was rubbished by other scientists with their “there is no evidence” evidence.
FLAWLESS EVIDENCE HAS BEEN IGNORED IN PROMULGATING GUIDELINES
National Confidential Enquiry into Patient Outcome and Death (NCEPOD) published evidence that over a 2 year-period in UK hospitals “9 out of 19 patients with sickle cell disease who had pain on admission and who then died had been given excessive doses of opiods” [11 12]. Yet in the Guidelines for sickle cell crisis NICE recommends “a strong opiod intravenously”. [13 14] On the Death Certificate “Chest Syndrome” would be written as cause of death.  Not a word about the fact that respiration is ominously suppressed with Morphine & Diamorphine , causing the chest syndrome .
MEDIA BREAKING NEWS: CAN HIDDEN AGENDA BE EXCLUDED?
Newspapers, radio, TV, and Social Media placard contradictory “evidence” most notable in the Stains/Cholesterol controversy [18-24]. When the evidence that world media had trumpeted loudly was found to be false and withdrawn from scientific journals, the media never went back to correct false evidence. Two examples:
(a) On Sunday 3rd May 09.15 GMT 1987 BBC World Service in its SCIENCE IN ACTION programme broadcast that British scientists had evidence that homosexuals and central Africans had a common genetic factor that predisposed them to AIDS, and that the research had been published in Lancet the previous day . Having just returned from a 6-week fact finding tour in Africa where I did grassroots epidemiological research to unravel the main cause of AIDS there, I knew at once that the Lancet genetic evidence was highly suspect, and I said so. Mine was the first critical letter the Editor published: “To use genetic data from this anthropologically distinct group, who do not even have AIDS, to cover ‘Central Africa’ leaves a lot to be desired” . The scientific authors of the article subsequently wrote confessing “ERRONEOUS DATA” . Did SCIENCE IN ACTION apologise to homosexuals and Central Africans for broadcasting erroneous data?
(b) BMJ publication that a Ghanaian nurse flew the 45 minutes from Kumasi to Accra and developed intestinal infarction and was found to have electrophoresis-proven Sickle Cell Trait  turned out to be False Evidence! [29 30 31]. Although the false Case Report was then withdrawn from publication, The TIMES Science Correspondent did not withdraw his reprehensible recommendations based on the false evidence . Professor Hermann Lehmann protested from Cambridge .
Research Evidence, Expert Evidence, Opinions, are all human generated. Shall we continue to wax eloquent about Evidence-based Medicine without scrutinising the evidence producers for probity? Should not Editors now begin to ask reviewers who pass scientific articles as fit for publication also to declare “Competing Interest”?
Competing Interest: None Declared.
Felix I D Konotey-Ahulu FGA MB BS MD(Lond) DSc(Hon UCC) DSc(Hon UH) FRCP(Lond) FRCP(Glasg) DTMH(L’pool) FGCP FWACP FTWAS ORDER OF THE VOLTA (OFFICER) Kwegyir Aggrey Distinguished Professor of Human Genetics University of Cape Coast, Ghana; Former Consultant Physician Genetic Counsellor in Sickle Cell and Other Haemoglobinopathies Korle Bu Teaching Hospital & Director Ghana Institute of Clinical Genetics, and 9 Harley Street, Phoenix Hospital Group, London W1G 9AL. Website: www.sicklecell.md
1 Holger J Schünemann, Yuqing Zhang, Andrew D Oxman. Distinguishing opinion from evidence in guidelines. BMJ.366:doi 10.1136/bmj.l4606 July 27 2019 pages 151-153.
2 McCartney Margaret. Evidence in a post-truth world. [“seams of multiple misinformation” pervading the scientific world] BMJ 2016; 355: 16363, November 28, 2016.
3 Dyer Clare. Journal agrees to retract paper after university found study was never done. BMJ 2013; 347: f55
4 Konotey-Ahulu FID “Private Thoughts: There is no evidence that I was born on a Saturday. Postgraduate Medical Journal of Ghana 2012; 1: 32-33 33” which often proved superiority of history over science in arriving at truth.
5 Ernst Edzard. Absence of evidence is not evidence of absence. BMJ 19 March 2012. https://blogs.bmj.com
6 Konotey-Ahulu FID. History versus Limits of Science: Is Solomonic Genius a Y Chromosome Phenomenon? J Genet Disorders Genetic Reports 2014; 3: 2
7 Zuckerman Lord Solly. Pride and Prejudice in Science. Randolph William Lovelace II Memorial Lecture. Aerospace Magazine 1974. 45: 638-647. [Also republished with permission in Ghana Medical Journal 1975 Vol. 14 No. 1 p 52-60]
8 Lock Stephen, Wells Frank (Editors). Fraud and Misconduct in Medical Research. BMJ Publishing Group, 1993. London WC1H 9JR. [ISBN 0 7279 0757 3]
9 Boyo AE, Cabannes R, Conley CL, Lehmann H, Luzzatto L, Milner PF, Ringelhann B, Weatherall DJ, Barrai I, Konotey-Ahulu FID, Motulsky AG. WHO Geneva; Scientific Group on Treatment of Haemoglobinopathies and Allied Disorders. (Technical Report 1972); 509: 83 pages.
10 Doll Sir Richard. [October 28 1912 to July 24 2005] Obituary Lancet 6 August 2005, Volume 366, Issue 9484, p 448.
11 NCEPOD (National Confidential Enquiry into Patient Outcome and Death). Sickle: A Sickle Crisis? (2008) [Sebastian Lucas (Clinical Coordinator), David Mason (Clinical Coordinator), M Mason (Chief Executive), D Weyman (Researcher), Tom Treasurer (Chairman) firstname.lastname@example.org
12 Konotey-Ahulu FID. Poor care for sickle cell disease patients: This wake-up call is overdue BMJ Rapid Response May 28 2008 BMJ 2008; 336: 1152 to Susan Mayor “Enquiry shows poor care for patients with sickle cell disease” on National Confidential Enquiry into Patient Outcome and Death (NCEPOD) REPORT “SICKLE: A Sickle Crisis? (2008) http://www.bmj.com/cgi/eletters/336/7654/1152a#196224 | http://email@example.com
13 NICE. Management of an acute painful sickle cell episode in hospital: summary of NICE guidance. BMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e4063 (Published 27 June 2012) BMJ 2012;344:e4063
14 Konotey-Ahulu FID. Management of an acute painful sickle cell episode in hospital: NICE guidance is frightening1 Sept 7 2012 www.bmj.com/content/344/bmj.e4063/rr/599158
15 Konotey-Ahulu FID. Opiates for sickle-cell crisis? Lancet 1998; 351: 1438.
16 Konotey-Ahulu FID. The Sickle Cell Disease Patient. Natural History from a clinic-epidemiological study of the first 1550 patients of Korle Bu Hospital Sickle Cell Clinic. First Published 1991 and reprinted 1992 by The Macmillan Press Ltd. London and Basingstoke. Published & Reprinted 1996 by Tetteh-A’Domeno (T-ADCo) Watford, Herts, England.
17 Konotey-Ahulu FID. Management of sickle cell disease in the community. BMJ Rapid Response 13 April 2014 [90 references] to Brousse V, Makalli J, Ress DC: management of sickle cell disease kin the community. BMJ 2014; 348:g1765 doi.10.1136/bmj.g1765 http://www.bmj.com/content/348/bmj.g1765/rr694233
18 Godlee Fiona. Statins: We need an independent review. BMJ 2016; 354: i4992 http://www.bmj.com/content/354/bmj.i4992
19 Knapton Sarah. “End statins controversy with government review”. Daily Telegraph. Friday 16 September 2016, page 1.
20 Krumholz Harlan M. Statins evidence: when answers also raise questions. Sharing the data is more likely to settle the debate than another review. BMJ 2016; 354: i1463 (doi:10.1136/bmj.i4963)
21 Blakemore Sarah. Statins: We need an independent review. BMJ Rapid response www.bmj.com/content/354/bmj.i4992/rapid-responses.
22 Taylor Rose. Taking Statins after 75 ‘nearly halves risk of heart attack’. THE TIMES Front Page Headline Wednesday July 31 2019. [Quote: Sir Nilesh Samani, medical director at the British Heart Foundation said: “This study, although observational, adds to evidence that statins reduce heart attacks and strokes in older people”.] ***NOTE “EVIDENCE” here too?
23 Kendrick Malcolm. The Great Cholesterol Con - The Truth About What Really Causes Heart Disease And How To Avoid It. John Blake 2007. London [ISBN 9781-1-84454-610-7]
24 Le Fanu James. All Must Take Statins. Chapter 4 in: Too Many Pills – How too much medicine is endangering our health and what we can do about it. Little, Brown Book Group, 2018. London EC4Y 0DZ. [ISBN 978-1-4087-0977-1]
25 Eales L-J, Nye KE, Parkin JM, Weber JN, Forster SM, Harris JRW, Pinching AJ. Association of different allelic forms of group-specific component with susceptibility to and clinical manifestations of human immunodeficiency virus infection. Lancet 1987; i: 999-1002.
26 Konotey-Ahulu FID. Group specific component and HIV infection. Lancet 1987; i: 1267.
27 Eales L-J, Nye KE, Pinching AJ. Group-specific component and AIDS: Erroneous data. Lancet 1988; i: 1936.
28 Green RL, Huntsman RG, Serjeant GR. Sickle cell and altitude. BMJ 1971; 4; 593-595.
29 Addae RO. Sickle cell trait and altitude. BMJ 1972; 1: 53.
30 Djabanor F F T. Sickle cell trait and altitude. Brit Med J 1972; 1: 113
31 Konotey-Ahulu FID. Sickle cell trait and altitude. BMJ 1972; 2: 231-32 April 22
32 Green RL, Huntsman RG, Serjeant GR. Sickle and altitude. Brit Med J. 1972; 2: 294
33 TIMES The London. Sickle Cell Disease and Flying. Science Report – Medicine. December 9 1971.
34 Lehmann Herman. Sickle cell and flying. The TIMES, London. January 4 1972.
Competing interests: No competing interests