Outbreaks and Poor Communication: Could We Have Done Better?
Dr David Quek
"The public is poorly served by the coverage of medical science in the general press. Scientists and physicians blame the press, claiming that journalists are careless in their reporting, subject to competitive pressures, and ignorant of the scientific process. Journalists accuse the medical community of limiting access to information and erecting barriers to the public dissemination of medical research."
Drs Miriam Shuchman and Michael Wilkes.Medical Scientists and Health News Reporting: A Case of Miscommunication. Annals Intern Med (15 June 1997).
Almost exactly one year ago, a deadly viral infection claimed the lives of some 47 odd children in Malaysia. Amidst public clamour and finger-pointing, the disease was loosely identified as a "Coxsackie myocarditis", but this left the public with a lot of unanswered questions, and worse still left most physicians almost totally in the dark, regarding the actual cause and clinical course of this epidemic, which had external features similar to Hand, Foot and Mouth Disease (HFMD).
To make matters worse, diverse reports and isolation of various viral agents such as the enterovirus EV71, adenovirus, and coxsackie virus, further confuse the already hazy situation. Furthermore, detailed reports by some concerned physicians who have had similar experiences managing arguably the same serious condition, gave a somewhat different scenario from that of the official one.
From our interactive Outbreak news reporting exactly one year ago, the Berita MMA (July 1997), carried versions which implied that the most likely culprit agent was the enterovirus EV71, and that the clinically fatal syndrome was more suggestive of an acute fulminant brain-stem encephalomyelitis, associated with peripheral features of HFMD. Unfortunately, despite at least one "outbreak" seminar held by the Sarawak Health Department and Ministry of Health on the 22 July 1997, no official report has emerged, and we are still somewhat in the dark as to the actual status of the last epidemic.
This is sad, because, a very similar outbreak has now afflicted Taiwan, killing at least 50 young children, and is causing fear and anxiety on a smaller scale in Hongkong. The early scenario in Taiwan was remarkably reminiscent of our own outbreak where recriminations and confusion reigned, but hapless infants and young children continued to die too quickly for the authorities to comprehend the severity of this hitherto unknown infection.
Worse, they did not have any authoritative or comparative assistance to help them come to grips with their epidemic. Frantic questions were bandied about regarding its uncanny similarity to the Malaysian outbreak, only to be stonewalled by lackadaisical officialdom and tongue-tied bureaucracy. Happily though, through the internet and especially the PROMED site, some of our more independent-minded local experts have been very helpful and forthcoming in providing some much needed feedback to soften the panicky backlash from the Taiwanese media and public. Misconceptions were quickly dispelled and useful suggestions on how to contain the outbreak helped calm down the situation, but not before, a heavy toll was exactedsome 50 young children had died.
From this sad affair, one wonders if better sharing of information, and a more prompt appraisal with better, more definitive and comprehensive reporting from our end, could have lessened the impact of this frightening epidemic. Could more children have been saved? Could we have shortened the duration of the outbreak? Might we have been the initiators or pioneers of earlier preventive measures? Could we not have been more responsible as global citizens, so that many more lives elsewhere in the world, might have been saved?
Once again, over the past few weeks, the editor of the Berita MMA has been assailed with many queries by doctors and lay persons alike with access to the internet. Many are truly concerned that up to now, we still remained mired in uncertainty regarding our own outbreak.
Perhaps, our Health Ministry should have been more forthcoming in providing an updated, accurate and comprehensive report on our now past outbreak, so that we can all learn from it more thoroughly. Although the Health Ministry has done commendably well, in disseminating useful knowledge about hand-foot-and-mouth disease (HFMD), and have quickly highlighted and enforced several relevant preventive measures, the final report and assessment has not been made known, to date. Thus, many well-meaning physicians are left ambiguously unsettled as to the actual situation.
This has therefore, fanned some severe criticisms from epidemiologists and clinicians, elsewhere and within, who felt (justifiably) that we should have been better informed, and that governmental interference should be kept at its minimum to let experts carry out their duties and expound their knowledge without fear or favour. The spectre of the Official Secrets Act should not be suspended like a Damocles' sword over our scientists, an unuttered but insinuated threat to silence them from speaking their minds, without "official" clearance or permission.
Should scientific and medical information be subjected to such antiquated rules which belie a different age? It is clearly anachronistic in this age of near-instantaneous knowledge and multifarious information of the world wide web, to try and curb or even censor, useful and beneficial information. With the ever widening ramifications and interconnectedness of the internet and cyberspace, one can literally access whatever information or misinformation that one wishes to.
However, I wish to reiterate here, that although the internet is one huge global complexity, its information largesse is unfiltered and oftentimes incomprehensibly contradictory and confusing. Clearly, we must have authoritative masters who can provide the best and untainted answers, dispassionately.
It is heartening to know that we do have certain centres of excellence for infectious disease surveillance from the USA, i.e. the University of Nebraska Department of Virus Research and the Centre for Disease Control, and recently the Japanese National Institute of Infectious Diseases (NIID). They have been particularly helpful in their unbiased appraisal and recommendations. The Hongkong Health Authority has recently, also been very quick to react, and is to be lauded for its efforts in trying to stem the public panic which threatens to engulf the special economic territory. Clear and rapid dissemination of collated information (even if not irrefutably substantiated) surely helps in containing any alarming situation.
Any illness which is fulminant and rapidly fatal, is a trying and frustrating experience for many health workers. It is with collaboration and sharing of information from every possible and reliable sources, that helps lighten the burden of having to go it alone, and perhaps even help facilitate scientists to more rapidly identify the causative agent, and determine the clinical course more expediently.
The pursuit of such intricate research will be helped that much more, if knowledge is free-flowing and spontaneous, without any meddling or constraints from any quarters. Therefore, we should not allow illiberal, narrow-minded and incongruous rules from stifling the spontaneity of research and scholarship, lest we intend to kill off any innovativeness and inventiveness of scientists, everywhere. If we allow ourselves to be smothered by bureaucratic censorship, however well-meaning, we will all be the poorer for it.
Clinical or basic research is already at a comparably low level in Malaysia. It should therefore be encouraged wholeheartedly, so that more and more scientists can be allowed to explore newer and more innovative studies. One important area of clinical research is that involving infectious diseases which developing nations are particularly susceptible.
Clearly, from a global medical perspective, we are becoming increasingly beset with newly emerging infections as well as changing infection patternsfrom older microbes which have mutated into agents with increased virulence or antimicrobial resistance. Different mutant strains of hitherto mild and benign viruses have now been increasingly identified as being particular virulent and are causing different clinical manifestations and outcomes. The enterovirus 71 is one such agent which has been implicated as the culprit in several outbreaks in the past 2 to 3 decades.
In view of this, it is heartening to note that in Japan, through its NIID (National Institute of Infectious Disease), there has been an ongoing surveillance of various microbes including common viruses such as the Enterovirus. Using nucleotide sequencing techniques, their scientists have been able to determine changing patterns and behaviour of certain viral genotypes, and even further phenotyping them into their particular strains.
Molecular epidemiological comparative analysis can help in deciphering the differing pathogenicity and viral characteristics of certain strains, and therefore help monitor outbreaks with better confidence. Clearly cross-border assistance can help isolate culprit strains very much more rapidly, and perhaps allow earlier identification. This can therefore enable preventive measures to be instituted early, or even standardize therapeutic measures to help save lives.
In view of the endemicity of such common viruses in the region, it behooves the Malaysian scientific community to take cognizance of this circumstance, and perhaps emulate the USA and Japan in setting up such infectious disease surveillance units, so that we can track our own viral strains more closely.
We already have several viral research laboratories such as those at the IMR, UH, USM and now Unimas. Perhaps we can expand these facilities so as to foster closer collaboration and exchange of information and ideas, and help unify a common stance against this and future outbreaks. Participating hospitals and the Ministry of Health should render their fullest support, and allow these centres to attain their true potential. Muzzling exchange or dissemination of information, because of fear of conflicting sensitivities should be made a thing of the past.
18 July 98
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