A Reformation for our times
BMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b1080 (Published 18 March 2009) Cite this as: BMJ 2009;338:b1080
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A great analogy although I think this "reformation" has moved forward further than the article suggests. It is in part due to new technology but it's also been accelerated by an increasing population of people living with long term conditions where collaborative, partnership relationships between doctors and their patients are more desirable, satisfying and lead to better outcomes. When people are acutely unwell they are less able to fully collaborate and it can foster the more traditional parentalistic/subordinate relationship.
Doctors are no longer just fixers with their "miracle" cures of the 20th century but are now, along with other healthcare professionals, increasingly health coaches, teachers and guides, enabling people to make to sense of, adapt and self manage in the face of their changing life circumstances.
Competing interests: No competing interests
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
Competing interests: No competing interests
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.
Competing interests: No competing interests
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
Competing interests: No competing interests
Martin Luther's Protestant Reformation as a retrospective mirror for the present Internet Revolution
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-Gã, so I am an authority on it. When
I read on the net “Gã has two tones, Dangme three” I knew immediately that
it was incorrect, for Gã 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 Gã 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-
Gã 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
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-Gã 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-Gã 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
Competing interests: No competing interests
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
Competing interests: No competing interests
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
Competing interests: No competing interests
Re: A Reformation for our times
This article uses the wrong analogy. The Reformation was not a step in the right direction but something else. Without wishing to offend anyone, suffice it to say that it changed the Bible from being the inspired word of God (entrusted in interpretation to the Magisterium of the Church) to "whatever you think yourself." It divested the Liturgy of many of its sacramental sources and replaced the Pope with Henry 8th. To go on to equate this process with internet medicine and self help reading on Google beggars belief.
Everyone sees there is a sea change in the way doctors and patients do business. This also applies to car mechanics and chefs. People now read up on everything and are self "educated" about all the activities of daily life. How each profession and facet of life adapts to this new creature is a work in progress and medicine is no different to accountancy or chiropody! A little knowledge is a dangerous thing and Richard Smith's 25 year old son and his pals (see rapid response) may rue the day they didn't listen to someone (GP) qualified in the area. The Google reader is an amateur whereas the doctor, car mechanic, chef is a professional, who knows his trade and takes responsibility for his actions and advice.
The Bible is the inspired Word of God, the internet isn't. Catholic Church bashing may seem PC and smart but it serves only to undermine the position of those who engage in it.
Competing interests: No competing interests