The other Twitter revolution: how social media are helping to monitor the NHS reforms

The Twitter Revolution that Professor Martin McKee and colleagues
(February 12) showed was "helping to monitor NHS reforms" [1] is but one
example of the enormous potential of social networking. Since the Obama
phenomenon which made use of this to spread critical information to a huge
number of people in no time at all, social networking has been used to
achieve the hitherto unachievable. In short, social networking has
precipitated revolutions the latest of which is the Egyptian Friday 11th
February 2011 Cairo's Tahrir Square Revolution which achieved the hitherto
unachievable through the organisational grass roots use of Facebook and
Twitter.

AFRICAN SCIENTIFIC REVOLUTION ACHIEVABLE "MIZRAIMICALLY".

The title of The 5th TWAS-ROSSA Young Scientists Conference (26th -
27th February 2011) which took place at the Hilton Hotel, Nairobi last
week [2] was "Exchanging Knowledge on Climate Change Impacts and
Vulnerability in Africa: The Role of Networking". Summing up that
remarkable Conference which covered subjects from climate change effects
on agriculture, flood risk management, institutional networks for exchange
of knowledge, cryobiology, local community knowledge of and adaptation to
climate change, etc Dr Eng Shem Arungu-Olende, Executive Director of the
African Academy of Sciences hit the nail on the head when he said
"Promoting net working does not have to be formal ... very exciting
research can be communicated from individual to individual, from
individual to institutions, and from institution to institution". The
exciting process, said Arungu-Olende, "can generate knowledge and
disseminate that knowledge for quite awhile" [2]. This was also emphasized
by Professor Mohamed H A Hassan, Executive Director Emeritus of the
Trieste based TWAS (Academy of the Developing World) and President of the
African Academy of Sciences. Networking that produces an unexpected and
impressive result where despair existed before, is what I now describe as
a revolution achieved "mizraimically". Mizraim is what my Krobo tribes
people call Egypt, a name originating from biblical times. [3] No where is
such a revolution more urgently needed than in the most pressing health
issue on the African Continent at the moment.

TACKLING THE SUB-SAHARAN HIV-AIDS MENACE "MIZRAIMICALLY"

(1) "Nearly 1000 babies are born every day in sub-Saharan Africa" is
the British Medical Journal's headline a mere 3 months ago. [4]

(2) "Children from Zevenfontein (South Africa) where 85 per cent of
the community are HIV Positive" [5] - Financial Times, London.

To many outside Africa (and even within Africa) this situation
produces reactions such as "Normal, of course"; "Not surprising at all";
"What else do you expect?" ; "If we in the Congo don't change our sexual
habits the Congo could be wiped off the map" [6], and "Africa left to the
lions" [7] and so on and so forth. Therefore, I ask, does sex alone
account for 1000 HIV Positive babies a day born to 1000 mothers a day who
must be HIV Positive, and the implied 1000 a day HIV Positive men linked
to these women? But to me, and to many fellow Africans the situation calls
for a Revolutionary Approach, and hence our great fortune to have
Facebook, Twitter, and LinkedIn to help begin this process
"mizraimically"! I said as much during my Award Lecture last Saturday (26
February) in Nairobi. When TWAS-ROSSA (Academy of Sciences for the
Developing World's Regional Office for South Saharan Africa) announced
last August in Hyderabad, India, that I had been awarded the "2010 TWAS
REGIONAL PRIZE ON PUBLIC UNDERSTANDING AND POPULARIZATION OF SCIENCE" [8]
I was told that when collecting the Award in Nairobi in February 2011 I
would be expected to give a Lecture. Well, I thanked God and took courage,
and gratefully announced that I would give the following Double Lecture,
one after the other immediately on receipt of the Award:

Public Understanding and Popularization of Science as illustrated by
(i) The most prevalent hereditary affliction in sub-Saharan Africa -
Sickle Cell Disease and Other Haemoglobinopathies
(ii) The most serious acquired affliction in sub-Saharan Africa - HIV/AIDS

Which was what I did last week when I used the first lecture to
introduce my recent invention of the 'kanad' as a novel tool for genetic
counselling and voluntary family size limitation (GCVFSL) in Sickle Cell
Disease and Other Haemoglobinopathies [9]. The second lecture concentrated
on Africa's AIDS Catastrophe, and how Facebook, Twitter, LinkedIn could
begin to spread the word round, alarm our kith and kin in the Diaspora,
and begin a revolution.

SUMMARY OF AIDS LECTURE AT TWAS-ROSSA CONFERENCE NAIROBI

1. One thousand HIV Positive babies born every day in sub-Saharan
Africa.

2. 85% of the Zevenfonteirn Community in South Africa are HIV-
Positive

3. And this in spite of Global Funds into Africa?

4. In spite of our Ministries of Health and Colleges of Physicians
and Surgeons working flat out?

5. Despite WHO's thundering the "Wear Condoms" and "Stick to one
woman" advice?

6. Have top to bottom (ie Globalisation) Health Schemes failed?

7. Was it not time to start a bottom-up (ie from grass roots up)
health management approach using our Traditional Chiefs?

8. What happened to Professor Kihumbu Thairu's grass roots upwards
approach emanating from the impressive Symposium organised jointly by The
Commonwealth Secretariat and the Kenya Medical Research Institute (KEMRI)?
[10] Was Thairu's approach tried and found wanting?

9. Meaningful Research: Is it not time for every one of us,
especially the Young Scientists gathered here, to use Epidemiology

(a) to find out what is happening on our dear Continent to give rise
to 1000 HIV Positive babies every single day and to determine how it is
possible for 85% of the Zevenfontein Community in South Africa to be HIV
Positive when Professor Metz had written to me from Pretoria less than 25
years ago that AIDS (or VIGS as he called it in Afrikaans) among the
Blacks was virtually nil? [11] And

(b) To communicate such findings expeditiously by Facebook, Twitter,
LinkedIn not only to our African Parliamentarians and Tribal Chiefs but to
Africans abroad?

I defined 'Epidemiology' in the Nairobi Lecture exactly as I had done
in the British Medical Journal after fact finding tours of Africa.
Epidemiology, to me, is finding answers to the six questions What? When?
Where? Which? How? Why? I told the Young African Scientists that armed
with little more than a note book and pen, finding answers to these
questions at the grass roots level will provide more information about our
plight [12] than dissecting genes of baboons and humans in the laboratory.
(I was referring to the misinformation/disinformation that two eminent
Harvard University Professors came out with when they concentrated rather
on splitting genes in the lab, namely that Senegalese prostitutes
harboured antibodies to monkey virus in their blood [13], when in fact
there was no truth whatever in their publication! It took another
respectable Harvard Professor Carol Mulder to write an editorial to redeem
the reputation of that great Institution: "A case of mistaken non-
identity" [14]). Though Kenyan scientists have been known to be able
sequence the genome of organisms very rapidly, our efforts should be
directed rather towards using Epidemiology as I have defined above to
arrive at truth very quickly.

10. The African Academy of Science [15] is without doubt a force to
reckon with (being robustly supported by the Trieste based Academy of
Sciences for the Developing World, TWAS [16], and it benefits from the
Network of African Scientific Organisations (NASO). The Academy stands
ready to use its "Quarterly Journal of Discovery and Innovation" to
disseminate new information. It is ready to resume on-line publishing
soon, so I urge that in keeping with the title of the Quarterly Journal
the young scientists should aim at going on line immediately and, as I
concluded my lecture, "aiming to publish new Ideas, new Findings, new
Treatments, new Discoveries, and new Approaches which will command the
attention of the rest of the world".

MONITOR HEALTH PROGRAMMES AND DISSEMIATE INFORMATION

Professor Martin McKee and team [1] are using Twitter and other
social media "to monitor NHS reforms". We in Africa should similarly
monitor everything from vaccinations, recommended drugs, official
declarations from above, not to mention "Global Programmes". I have
queried why the Maasai in Kinyawa, Kenya, the Luhya in Wabuye, Kenya, and
the Yoruba in Nigeria have been genome sequenced anonymously in the Global
Sequencing Programme, and yet the international gene sequencers claim they
got "informed consent" to do the work [17-20]. African scientists need to
find out what exactly is happening. Have some African genes been patented
anonymously yet "with informed consent" as the researchers claimed?

All foreign scientists do not have the same ethical calibre. [21]
Some feel Africa's pain; others do not, and we need to distinguish between
the two, and work with those who identify with us. I once pointed out
after Didier Fassin and Helen Schneider's amazing article in the British
Medical Journal on AIDS in South Africa [22] that scientists with Nazi
proclivities did not disappear when Hitler did. [23]. Professor George
Fraser and Dr Berno Muller-Hill said as much [24]. Matters that had been
dismissed as Conspiracy Theories have now been proven to be Conspiracy
Facts leading to open apologies by two living American Presidents, Bill
Clinton and Barack Obama [25, 26, 27]. It is a most heartening fact that
an increasing number of African Tribal Chiefs are computer literate and
will be happy to be kept in the social networking loop. Their subjects
prefer to listen to them to being fed top to bottom pronouncements - see
how Ghanaian Health Officials were forced to come out to answer questions
about serious side effects of Artesunate-Amodiaquine Combination Therapy
[28]. Ghanaian market women and roadside vendors are all social
networking, while Kenyans are doing their banking business through mobile
phones, bypassing the conventional High Street Banks. Scientists in Africa
need also to make use of these social networking media to create a health
revolution on the Continent.

Felix Konotey-Ahulu MD(Lond) FRCP DTMH FGA FTWAS FWACP FGCP Kwegyir
Aggrey Distinguished Professor of Human Genetics University of Cape Coast,
Ghana and Consultant Physician Genetic Counsellor in Sickle Cell and Other
Haemoglobinopathies, 10 Harley Street, London W1G 9PF.

1 McKee Martin, Cole Katie, Hurst Louise, Aldridge Robert W, Horton
Richard. The Other Twitter revolution: how social media are helping to
monitor NHS reforms. BMJ 2011; 342: d948 doi: 10.1136/bmj.d948 18
February 2011.
http://www.bmj.com/content/342/bmj.d948.full

2 TWAS-African Academy of Sciences The Fifth Scientists'
Conference on "Exchanging Knowledge on Climate Change Impacts and
Vulnerability in Africa: The Role of Networking" 26th - 27th February 2011
- Preceded by the NASAC-KNAW Conference on Impact of and Adaptation to
Climate Change in Relation to Food Security in Africa 23rd - 25th February
2011. Hilton Hotel Nairobi, Kenya.

3 The Holy Bible. "And the sons of Ham: Cush, and Mizraim (Egypt),
and Phut, and Caanan." Genesis Chapter 10 verse 6. The King James
Authourized Version, 1908 Edition - 60th Printing. B B Kirkbride Bible Co,
Inc. Indianapolis, Indian, USA 1964.

4 Zarocostas John. Nearly 1000 babies a day in sub-Saharan Africa
are infected with HIV. BMJ 2010; 341: c6937 doi: 10.1136/bmj.c6937. Dec. 1
http://www.bmj.com/content/341/bmj.c6937.full

5 Financial Times, London. AIDS in South Africa. Zevenfontein
where 85% of the Community are HIV Positive. Friday 20th September 2002,
page 14.

6 Finch Scott. The Ravage of AIDS in Africa. BBC World Service:
Science In Action, Sunday 18 October 1987, GMT 09.15 to 09.45.

7 Veitch Andrew. How to avoid catching AIDS. The Guardian, London,
November 21 1986, page 21.

8 TWAS (Academy of Sciences for the Developing World) Regional
Office for sub-Sahran Africa - Announcement in Hyderabad 20 October 2010
http://twas.ictp.it/news-in-home-page/news/twas-regional-prizes-for-public
-understanding-and-popularization-of-science

9 The 'kanad' in www.sicklecell.md/bio or www.konotey-ahulu.com/bio
2010.
The kanad in genetic counselling and voluntary family size limitation
(GCVFSL) in sickle cell disease and other haemoglobinppathies.

10 Thairu Kihumbu. Editor Symposium/Workshop Appropriate
Technologies for AIDS Management in Africa 3-7 September 1990, Kenya
Medical Research Institute, Nairobi with Commonwealth Secretariat SW1
London.

11 Konotey-Ahulu, FID. What is AIDS? Tetteh-A'Domeno Company,
Watford, England, 1989, 227 pages ISBN: 0 9515442 0 9

12 Konotey-Ahulu FID. Clinical epidemiology, not seroepidemiology,
is the answer to Africa's AIDS problem. BMJ (Clin Res Ed) 1987; 294(6587):
1593-1594. http://www.bmj.com/cgi/reprint/294/6587/1593.pdf [PubMed -
indexed- for MEDLINE (June 20 1987) doi:10.1136/bmj.294.6587.1593]

13 Essex Max, Kanki Phyllis. Comparison of simian immunodeficiency
virus isolates. Nature 1988; 331: 621-22

14 Mulder Carol. A case of mistaken non-identity. Nature 1988; 331:
562-63.

15 African Academy of Sciences. http://www.aasciences.org P O Box
24916, Nairobi, Kenya. [Retriring President Emeritus is Professor Mohamed
H A Hassan; Incoming President is Professor Ahmahdou Lamine Ndiaye]

16 TWAS. The Academy of Sciences for the Developing World is an
autonomous international organization based in Trieste, Italy, that
promotes scientific excellence for sustainable development in the South.
http://www.twas.org [Retiring Executive Director Emeritus is Professor
Mohamed H A Hassan to be succeeded on 28 February 2011 by Professor
Romaine Murenzi]

17 Announcement: http://www.1000genomes.org/files/1000Genomes-
NewsRelease.pdf International Consortium Announces the 1000 Genomes
Project. Major Sequencing Effort Will Produce Most Detailed Map of Human
Genetic Variation to Support Disease Studies. (Tuesday January 22 2008).

18 Wise Jaqui. Consortium hopes to sequence genome of 1000
volunteers. British Medical Journal 2008; 336; 237 doi:
10.1136/bmj.39472.676481.DB http://www.bmj.com/content/336/7638/237.1/full
January 31 2008

19 Konotey-Ahulu FID. 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]

20 Global Genome Sequencing: Some Ethical Considerations. In Howard
University National Human Genome Center Post-Inaugural Symposium on "1000
Genomes Project: On the Frontier of Personalized Medicine" at Ralph J
Bunch International Affairs Center, Howard University, 2218 Sixth Street,
NW Washington, District of Columbia, USA January 23, 2009.
http://www.howard.edu/calendar/main.php?calendarid=medicine&view=event&e...
-01-23

21 Konotey-Ahulu FID. Clinical Genetics: Ghanaian gratitude for
British and Hungarian contributors - A personalised historical perspective
Ghana Med J 2009; 43: 175-178. [Special Article December No. 4]
http://www.ghanamedj.org/articles/December2009/Fina%20Special%Article%20...

22 Fassin Didier, Schneider Helen. The politics of AIDS in South
Africa: beyond the controversies. BMJ 2003; 326: 495-97 (1 March)
http://www.bmj.com/content/326/7387/495.full
doi;10.1136/bmj.326.7387.495

23 Konotey-Ahulu FID. Wake up call and need for paradigm shift.
Brit Med Journal 2003 'Rapid Response' to Didier Fassin and Helen
Schneider's article opened up for Education and Debate: - The politics of
AIDS in South Africa: beyond the controversies. Brit Med J 2003; 326; 495-
497 (1 March 2003).
http://bmj.bmjjournals.com/cgi/content/full/326/7387/495 or/&
http://www.rethinking.org/bmj/response_30917.html

24 Muller-Hill Berno. Murderous Science: Elimination by Scientific
Selection of Jews, Gypsies, and Other - Germany 1933- 1945 [Translated
from German by George R Fraser] Oxford University Press, Oxford 1988.

25 Clinton President WJ. Apology on behalf of the American
government to survivors of the Tuskegee Syphylis Experiment victims.
Worldwide radio & Television. May 16 1997. Also Ken Getz; Tuskegee, a
Cloud Over Research. The Washington Post. Tuesday, Sept 30, 2008.
President Clinton publicly apologized to the eight surviving participants
of the shocking and unethical study, saying "What the United States
Government did was shameful".

26 Tanne Janice Hopkins. President Obama apologizes to Guatemala
over 1940's syphilis study. BMJ 2010; 341.c5494 doi:10.1136/bmj.c5494
http://www.bmj.com/content/341/bmj.c5494.full October 9, page 750.

27 Konotey-Ahulu FID. President Obama apologises over Guatemala
syphilis study: International cooperative research in jeopardy.
http://www.bmj.com/content/341/bmj.c5494.full/reply#bmj_el_243183 BMJ
Rapid Response Oct 17 2010

28 Amofah G. Furore over Artesunate-Amodiaquine Combiantion (ACT)
Drug. Daily Graphic, Accra. Monday May 5, 2006, page 23.

Conflict of Interest: None declared felix@konotey-ahulu.com