Showing posts with label disease communication. Show all posts
Showing posts with label disease communication. Show all posts

Thursday, 21 April 2016

Communicating science and medical research...

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http://virologydownunder.com/science-and-outreach-the-good-the-bad-and-why-to-get-involved/

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Sunday, 27 March 2016

Zika virus is a testing problem for science...

Edited by Katherine E Arden, Ph.D.
UPDATE #1: 30MAR2016
UPDATE #2: 08APR2016
UPDATE #3: 30MAY2016
I need to get this off my curmudgeonly chest.

I've watched the Zika virus (ZIKV) "event" since January 2016, back when I said this... 

...and wrote a small overview while on holiday.[1]

Since then I've been, on an almost daily basis, alternately and in no particular order disgusted, amazed, shocked, horrified, stunned, disappointed and flabbergasted by the quality, type and amount of detailed information available, about the discussion around that information as it comes out, about the language used and the assumptions underpinning the discussions that have occurred. In short - too many assumptions, too little virus testing data and too many people impatiently rushing to conclude that correlation is the same as causality.


The communication of being sure, or unsure...


There was a confusing comment from the Director General of the World Health Organization, Dr Margaret Chan. Keeping in mind that this is the organization that suggests how to communicate risk to the community in their document Risk communication and community engagement for Zika virus prevention and control: A guidance and resource package for country offices for coordination, planning, key messages and actions.[2]

So we are overwhelmed by non-evidence, despite the evidence not being available yet? How far from actual evidence is that? 

Before this, WHO has been good at saying "looks like something different is happening with ZIKV but we don't know much more yet. In the meantime we're doing things that facilitate reducing the known vector, the mosquito, and bites from them, we're ramping up the testing and the science and we're moving things along on the vaccine front, but we're not putting all our eggs into one basket just yet." 

Why are so many so hell-bent on jumping the gun on ZIKV? 

WHO's science meeting reviewed evidence linking ZIKV infection with foetal malformations and neurological disorders and advised that the implication from the evidence was that the link between microcephaly and ZIKV was looking real. 

Dr Chan said "If this pattern is confirmed beyond Latin America and the Caribbean, the world will face a severe public health crisis" - absolutely true.[22] But this still remains an "IF" for now.

Lab testing and reporting from Brazil needs work...

Among the 6,671 suspected diagnoses of microcephaly in Brazil - the rapid rise for which WHO called a Public Health Emergency of International Concern (PHEIC) - just 122 (1.8%) have any current laboratory evidence identifying that ZIKV infection - past or present - occurred. If there are more laboratory testing data from Brazil to fill this huge gap, they need to be talked about.

Brain injuries...

Microcephaly diagnoses and congenital brain malformations, which are rare diagnoses overall, have been occurring worldwide for a long time.[4] I don't know for how long - perhaps throughout human history? So if the epidemic of ZIKV is actually driving a sudden rise in microcephaly and foetal brain deformity diagnoses, plus meningitis and Guillain-Barre syndrome cases, those diagnoses should be higher in number than what is normal for Brazil. 

Finding a baseline on which to base the official line...

The rate at which microcephaly diagnoses have been reported in Brazil still awaits some type of overall agreement.[13] In the north east, individual reports quote doctors, such as the van der Lindens, who have personal experience in seeing dozens more examples of microcephaly and brain malformations from August 2015 onwards than they had been used to seeing.[11,12,26,27] 

This widely reported evidence is hard to deny despite being anecdotal-the doctors and their collaborators are yet to publish their observations.[25] NB: New paper describing 105 microcephaly diagnoses infants born in Pernambuco State, Brazil  was released after this post, including a van der Linden as author, but has no ZIKV testing.[29] A second study with a van der Linden finds ZIKV IgM in 7/23 microcephaly diagnoses.[30]

In this extrapolation, 2 and 12 are the limits of the 
range of microcephaly diagnoses 
reported by the US CDC.[24]
Publications still appear which use the initial rates of ~150 microcephaly diagnoses in Brazil per annum - about 0.005% of 2.9 million annual live births.[5] This is despite data and others' analyses suggesting that these may not be realistic rates. [6,7,8,9,10,14] 

The reported 'spike' in diagnoses might not be above, or as drastically above, normal figures for Brazil, or certain regions of Brazil, as at first thought. But even this fundamental knowledge remains unclear.

The vector in Brazil is probably something...

No mosquito species in Brazil has yet been identified as a carrier of ZIKV.[3] Testing is being done but no report of a mosquito testing positive for ZIKV have emerged as yet.[3] 

It's not clear whether this extra information would have any impact on the more general mosquito-reduction measures that have been rolled out - spraying, fogging and poisoning. 

However, might this knowledge gap have an impact on some species-specific anti-mosquito measures, such as those involving interfering with mosquito mating or reproduction?

We assume that the Brazil vector is Aedes aegypti because that's what's been the culprit elsewhere and because they can ingest and become infected by ZIKV.[17,18,19,20,21] Other Aedes species also stand accused, as does Culex quinquefasciatus.[23] So this too remains unclear.

Some clarity falls out from between the gaps...

From among all these gaps has recently fallen an article that makes sense.[15] 

No, it didn't support any causal link between ZIKV presence and any sort of brain damage in foetuses. 

It just describes the genetic findings from analysing 7 ZIKV genome sequences from 4 human cases and made a modelled estimate suggesting that ZIKV was in Brazil from May-December 2013. This may sink the canoe hypothesis.[28] 

That date could still change if other sequences are found of course - such as older ones in stored specimens. But it's a nice estimate for now. It may also explain why microcephaly diagnoses were predicted to have been high prior to 2015 according to the Mattos report,[6] if ZIKV is indeed a new and sizeable cause of the burden of  these diagnoses. While this paper tells its story with lots of dense detail - as befits a paper in the journal Science - it takes a little bit of extra time and space to clearly and plainly state what the data do not mean (see the quote above). 

This sort of extra detail is so very important. It shows that the authors have thought through their work and placed it in a bigger picture and it helps those who may be looking to paraphrase the study to see that it has limitations that should be mentioned. 

This really shouldn't be something to praise - it should be the norm - but in many of the Zikaglyphs put into print this year, care has not been taken, too many assumptions have been made and too little thought has gone into the complexities of trying to associate the presence of a pathogen with a disease that is occurring at the same time, or some days, weeks or months later on.

So maybe there is still some hope to be had that science and the media will start talking more frequently and clearly about what we don't know, what we haven't looked for and what other possibilities exist, instead of what we almost know.

"Yes, Zika infection during pregnancy can lead to brain-related birth defects in a fetus".[16]

Or maybe not quite yet.

In summary...

We do not yet have definitive scientific evidence of a causal link between increased microcephaly diagnoses, brain malformations and ZIKV infection.

That is not to say there is no such link, just that we have not yet gathered the evidence to confirm one.

Given the potentially severe consequences of the link being real, it is entirely appropriate that measures are being taken now to reduce exposures to ZIKV by potential parents of either sex.

Until data show otherwise, it remains possible that ZIKV is not to blame and so we need to keep an open mind, keep searching and keep carefully examining strong evidence, because if the cause is not ZIKV alone, or it is ZIKV working alongside some other factor(s), we are missing the boat and failing in our duty to help halt a severe public health crisis.

References...
  1. http://virologydownunder.blogspot.com.au/2016/01/zika-virus-briefly.html
  2. http://www.who.int/csr/resources/publications/zika/community-engagement/en/
  3. http://www.theglobeandmail.com/news/world/who-may-be-leading-brazil-down-wrong-path-on-zika-virus/article29390468/
  4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1716566/?page=3
  5. http://adc.bmj.com/content/early/2016/03/14/archdischild-2016-310590
  6. http://www.who.int/bulletin/online_first/16-170639.pdf
  7. http://crofsblogs.typepad.com/h5n1/2016/01/is-microcephaly-surging-in-brazil-or-just-efforts-to-find-it.html
  8. http://northshorejournal.org/microcephaly-and-zika
  9. http://www.nature.com/news/zika-virus-brazil-s-surge-in-small-headed-babies-questioned-by-report-1.19259
  10. http://www.nature.com/news/zika-and-birth-defects-what-we-know-and-what-we-don-t-1.19596
  11. http://www.theguardian.com/global-development/2016/jan/25/zika-virus-mosquitoes-countries-affected-pregnant-women-children-microcephaly
  12. http://www.wsj.com/articles/the-brazilian-doctors-who-sounded-alarm-on-zika-and-microcephaly-1454109620
  13. http://www.thelancet.com/pb/assets/raw/Lancet/pdfs/S0140673616002737.pdf
  14. http://virologydownunder.blogspot.com.au/2016/01/microcephaly-in-brazil-is-it-occurring.html
  15. Zika virus in the Americas: Early epidemiological and genetic findings
    http://science.sciencemag.org/content/early/2016/03/23/science.aaf5036.full
  16. 5 things the world has learned about Zika so far
    http://www.statnews.com/2016/03/25/new-understanding-zika/
  17. http://www.ncbi.nlm.nih.gov/pubmed/26527535
  18. http://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0001792
  19. http://www.ncbi.nlm.nih.gov/pubmed/25299181
  20. http://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0004543
  21. http://www.ncbi.nlm.nih.gov/pubmed/26527535
  22. http://www.who.int/emergencies/zika-virus/mediacentre/webcast-22-3-2016/en/
  23. http://www.reuters.com/article/us-health-zika-brazil-idUSKCN0W52AW
  24. http://www.cdc.gov/ncbddd/birthdefects/microcephaly.html
  25. http://time.com/4202262/zika-brazil-doctors-recife-investigation-outbreak/
  26. http://www.nature.com/scitable/blog/scibytes/the_new_ebola_zika
  27. http://www.newsweek.com/2016/03/11/zika-microcephaly-connection-brazil-doctors-431427.html
  28. http://wwwnc.cdc.gov/eid/article/21/10/pdfs/15-0869.pdf
  29. http://wwwnc.cdc.gov/eid/article/22/6/16-0062_article;
  30. http://www.nejm.org/doi/pdf/10.1056/NEJMc1603617
Updates...
  1. Added reference to a van der linden publication [29]
  2. Added a reference to a second Dr van der Linden publication [30]
  3. Repaired typos to Crawford Kilian's name

Friday, 25 December 2015

Avian influenza A(H7N9) virus case data in humans: more chicken scratchings

This is an example of a 2015 case announcement from the World Health Organization (WHO). I think it aims to provide information on some avian influenza A(H7N9) cases that occurred in China.

From WHO Disease Outbreak News (DON) at
http://www.who.int/csr/don/15-june-2015-avian-influenza-china/en/
I suppose it does do that in the most basic sense. Yes, if you were a casual electronic browser to the WHO disease outbreak news site (...get out more!) then you would learn of 15 additional human cases of disease presumably due to H7N9 infection. Twenty percent of these cases died and this happened within a month. 

But consider these questions for a moment:

  1. Why would you visit the WHO to learn of this, if you were not seeking some actual detail and evaluation of risk?
  2. If you were a casual browser, I expect you would come away from this with some out-of-context concerns about a bolus of cases in such a short period, spanning a wide age range and occurring across considerable geographic distance. Should you be worried? Is this the precursor to some larger outbreak? Each difficult to answer from this very small cross-section of information.
  3. These public data are relied upon by some when they write papers or release infectious disease reports - so why not include key - yet deidentified - demographic detail in a line list format - remember MERS-CoV in South Korea anyone? That WHO list [4] was messy [5] but it was a step forward for those outside the WHO network who wanted free, publicly available basic data, quickly
In my opinion, the premier emerging disease tracking and publishing - at least in terms of accessible, basic, rapid, searchable, freely accessible and up-to-date emerging infectious disease information - is the team at FluTrackers. Keep your predictive modelling - I'd trade it all in for a clone army of these guys any day! The FluTrackers line list on H7N9 includes some of these cases[6]...and as you can see in the snippet below, even their scouring of the media from China does not help to fill in the data gaps on these cases...
From FluTrackers' H7N9 line list at
https://flutrackers.com/forum/forum/china-h7n9-outbreak-tracking/143874-flutrackers-2013-15-human-case-list-of-provincial-ministry-of-health-government-confirmed-influenza-a-h7n9-cases-with-links?t=202713 [6]
So why does the WHO bother with this information at all? I can't speak for them. But one reason may be because it is relied upon by those who study and prepare for the emergence of new or re-emergence of old infectious agents.[1] These people consume this sort of information to track what's happening outside their own back yard and to weigh the risks that a new bug may come knocking at the gate thanks to a speedy international plane flight. But when the host country is slow or perhaps even reticent to identify key case details, a knowledge gap emerges and may widen. This particular gap has been growing since 2014's H7N9 3rd wave. Perhaps since the 2nd wave.

When sufficient - or any - detail is lacking, then it comes down to the public to look for any answers they seek...by themselves. In this case, that has been FluTrackers & Co; this source has proven itself very worthy for this and for other viral threat monitoring, but cannot be expected to fill this need indefinitely.[2,3]

H7N9 is a good example of an absence of obvious change to the flow of information that the world's public, citizen scientists and its more professional scientists receive about new infectious threats. And this is all a bit strange because I was sure we'd heard a lot about the need to do much, much better on this sort of tracking and chatting in 2014/5 during one of the biggest modern moments of being "caught with our pants down" - the Ebola virus disease epidemic.

Time and viruses wait for no person. Be faster.

Ho. Ho. Ho.

References...

  1. http://ecdc.europa.eu/en/publications/Publications/RRA-Influenza-A-H7N9-update-four.pdf
  2. http://www.ncbi.nlm.nih.gov/pubmed/24885692
  3. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4140362/pdf/jphr-2012-2-e29.pdf
  4. http://www.who.int/emergencies/mers-cov/MERS-CoV-cases-rok.pdf?ua=1
  5. http://virologydownunder.blogspot.com.au/2015/06/matching-mers-case-identification.html
  6. https://flutrackers.com/forum/forum/china-h7n9-outbreak-tracking/143874-flutrackers-2013-15-human-case-list-of-provincial-ministry-of-health-government-confirmed-influenza-a-h7n9-cases-with-links?t=202713

Saturday, 4 July 2015

Editor's Rant: Communicating the data and about the data...

It is pretty damn hard work trying to get hold of data on virus outbreaks around the world. 

When it is, it may be available in unfriendly formats. It may not be made public at all. When it is available, it is often slow to appear or it may have random reporting gaps, or be partially incomplete. The style of the released data can change overnight as well, sometimes going from detail to summary.

So why bother about trying to get hold of these numbers at all? It's not like I work in the field. Well, that is a question I'm increasingly asking myself of late too. My personal reason has been because I think there need to be more voices in the vacuum between the numbers being reported and the often dry public health reports. I think scientists, even if they are not lifetime experts on a given virus or outbreak, still have much to offer when they come out from behind their manuscripts and apply their skills to interpreting what's happening. Well, many do anyway. And they should do it more. Now, perhaps more than ever, science needs steer away from its cold, dense and boring niche writing to a chattier, more helpful and community-based style of engagement. It astonishes me how often the public's interpretation of outbreak numbers must come from the media or from hobbyists, or even professionals who work in other areas and give of their own time to help explain something to us in their personal time. Helpful and engaging information and better access should come from the source of the data.

So it becomes really annoying (you would have to know me quite well to know how many times I just rewrote those words) when data are given out for public use that are a total mess...and there is not one tiny mote of explanation for it. I called it appalling on Twitter tonight. And at other times there are no explanations for why there are gaps, why data are delayed, why the format may have changed today compared to last week, why a line list is missing a case, using a new and totally independent numbering scheme or suddenly reshuffled, why there is no news about a new outbreak. No word. No contact. No-one taking the lead. No...communication.

I have met a lot of people since I have been blogging who, in various ways, have put in their own personal time to help out bigPublicHealth, to help take up the slack in communicating to the media and to the public. It is hard to quantify the impact of that combined help-but I can assure you that it reaches far and wide and is not insignificant. One would think that it should be easier to provide this help when one is willing to make use of their own time and use their own resources, or that those people should be shown enough respect to be able to simply find and apply reliable raw data so they can help out. But one would be an idiot. I very clearly remember a time when I could send a public Tweet to WHO's Head of Public Relations, Gregory Haertl, and get an informed reply. Those days have passed. I remember there being an #AskEbola channel on Twitter that gave answers. That engagement is just not there anymore. I'm sure its funding and resources and blah blah...but not as sure as I could be if that were spoken about in public. Communication. Someone needs to step up on this. As the quotes above allude to, 2015 is not 2014. And one of those differences is that everyone wants timely and comprehensive information they can rely on during times of outbreak. This hasn't been discusses enough but it should be.
 

Thursday, 14 May 2015

Outbreak resources: more expert detail presented simply, to more people, at a trusted site, quickly, and for free...

Many, many of us have learned a lot about Ebola virus and Ebola virus disease (EVD) over the past 61 weeks - some more than others. 

Some have paid very dearly for their new knowledge and some few have leveraged the event to try and make a buck or draw more attention to themselves or their trade.

Many have been scared - few outside Guinea, Sierra Leone and Liberia have had a real need to be - but fear of this tiny killer is understandable. I stand by my comments on that from back in August when the United States woke up to what had been happening in west Africa for five months, and promptly started freaking out...without evidence of any widespread threat or danger.


Not everyone has a library on everything
For all of the unwanted, unnecessary and often inflammatory commentary, hypotheses, guesses and conspiracy theories, there was some good information to be found about EVD. Sometimes it was only able to be found by academics or others with access to journals that sit behind fee-for-view virtual walls (paywalls). Sometimes the science was too dense for the public to follow - even when they could access it. But most of the time it just took far more digging to unearth the basics than it should have. It would have been good if more of those who could access and interpret that information, had proactively done so.

EVD in west Africa helped generate a lot of publicly accessible descriptive information about some of the technical language of infectious disease outbreaks. But there could be more. New information for public consumption should be...

  • Clear, simple information that can be easily read and shared using today's short, punchy and graphic-laden social media communication tools
  • Information that is quick and easily found or can be found using (way more) friendly search engines. A page of 2,000+ poorly descriptive results returned from a keyword search...is not helpful
  • Broad descriptions about broad topics - not just narrow descriptions for one aspect of one outbreak caused by one virus. We need to explain the wider patterns that are shared among many outbreaks and by many viruses. Ebola virus is not the first bloodborne virus, not the first sexually transmitted virus, not the first virus to spread in vomit and faces or by droplets, or to survive on surfaces, or to mutate, or to have an RNA genome, or to be detected by RT-PCR, or to have its genome sequenced, or to be the trigger for contact tracing, or to have just appeared in west Africa in 2014...etc. Start tying these patterns together to give the public a better sense of what we live with every day, instead of responding to the now and the scary.
  • A single online, well formatted (for multiple devices) site that hosts all this information provided, checked, updated and agreed upon by experts in the fields, written by communicators and hosted by the new and improved World Health Organization (WHO). The world needs a one-stop outbreak info shop that it can rely on. And that shop should be staffed by assistants who are available to answer questions or direct customers to the aisles best suited to their needs. We expect access to information and answers to questions from our phone company, so why not from our World's health experts?
  • Using better citation to acknowledge the reference material in public health information - what is so wrong with letting everyone know what the guidelines are guided by? Anecdotal is not enough.
  • Date stamped to make it clear when it was written and when it was updated. Am I looking at contemporary thinking - or something from 2 days ago before that major discovery/event changed everything we knew about virus X? 
Many public health entities already create pages upon pages of information on each outbreak but some of that is written for people who like to read...a lot...and is in a style that is sometimes too dense and dry with words and phrases that are not well defined. A glossary might also be of use. 

There will always be a portion of the public who seek their news and detail from the loudest and most garish 'news' source. There are also many who would like to be the smartest person at water cooler - but not if that comes at the expense of trying to locate and then wade through reams of technical guff. 


More expert detail, simply presented, to more people, from a trusted site, quickly and for free.

The next 'Ebola' might have a much harder time getting traction in a territory if its population is ready for it, or can get up to speed quickly.

Friday, 3 April 2015

Hans Rosling, a micro-outbreak of Ebola in Liberia and trust issues in Guinea...

As is always the case, Prof Rosling can be seen in front of an audience here, providing a beautifully articulated example of how trust in the Ebola virus disease (EVD) treatment centre/unit plays such a pivotal role in (a) the containment of EVD, even witting a family and its contacts, and (b), the likelihood of survival of EVD patients.

Frame taken from a BBC News video which was being hosted in
an African Geographic Magazine story here. Red dots are survivors,
black dots are deaths
Click on image to enlarge.
In this example, which you can listen to in its entirety here, as time went on, trust grew and this fewer transmission occurred and more f those infected, survived.

This would seem to be a great example of what is lacking in Guinea - trust - a lack of trust that others are be able to stop the spread of virus and to save the lives of those infected. Thus people are not presenting for help at all and still being managed in the community - possibly infecting others - or else they are not presenting early enough, before the disease has done too much damage to the person. Trust and communication is increasingly seen as being as important to the successful reduction of cases in Liberia and Sierra Leone as the building of treatment centres - the two must co-occur.

Trust comes from understanding, and that is heavily influenced by communication. Communication of accurate information, of clear and digestible information. Communication to the right people using the moist effective channels is also essential.

It still feels like communication, or at least accurate and successful communication accessing the key important and influential people, may be the weakest part of the response in Guinea. It seems to have been better implemented in Liberia and Sierra Leone - or maybe just better received. Is it a groundwork thing? Difference in the way science is presented in different countries? I know far too little to guess further.

There continue to be more security incidents and other types of refusal to cooperate in Guinea compared to the other two countries afflicted with the Makona variant of Ebola virus. These incidents are a marker of a community that does not believe or trust those claiming to be here to help. And that's a problem for stopping the constant rivulet of EVD cases in Guinea; a rivulet that never became the river of hundreds of EVD cases per week seen in Liberia or Sierra Leone, but was still a flow that seeded infection across the region and the world. A case anywhere is a threat everywhere, to paraphrase others.


Location of laboratories in Guinea, Liberia, and Sierra Leone
 Location of laboratories in Guinea,
Liberia, and Sierra Leone.
From WHO SitRep 01APR2015.
But there may be other issues to consider and question. 

There are fewer treatment centres and laboratories in Guinea than in Liberia or Sierra Leone - strange given that Guinea is larger and that it still has a geographically widespread distribution of cases. 

While it has lately been noted that new cases in Guinea could be adding to the tally more simply because of success in reaching more remote areas, this seems only to add support to the need for better communication and to provide more of a presence in these remote areas. Hopefully, now that this happening through the efforts of the US CDC and others, we will soon see the pay off as a reduction of EVD cases. But the rainy season is near and travel will be made into a muddy mess by that. Time has never been on the side of those trying to stop this epidemic.

Thursday, 27 February 2014

Coming back to MERSerable data...

A grab of the past 20 MERS-CoV positive human cases reported
by a Ministry and listed over FluTracker's if you want to look in
more detail. Even though the tally goes to 191 - there are 186 total
cases
(some have been removed after being reduced in status to
probable cases). Under the FluTracker Case # banner, a pink fill
indicates a death. A pale blue fill under the Sex column indicates that
the World  Health Organisation (WHO) have reported the cases through
their Global (GAR) Disease Outbreak Notice (DON) website.
Click on image to enlarge.
I'm preparing a brief invited talk on MERS and MERS-CoV for next week at the Molecular Microbiology Meeting in Sydney

So I'm updating MERS-CoV data - 4 cases since last I did this. And the data remain as horrible as the last time I complained

The figure above highlights just how horrible. Have a look at:

  • How many data gaps there are for sex (a very basic piece of demographic information to provide without comprising patient identity)
  • How many data gaps there are for date of illness onset
  • The absence of any KSA unique identification codes (there were 4 provided in August...and that was that)
  • How many dates of hospitalisation there are
I'll throw up some new charts shortly but really, they will reflect these data gaps.

But really, this has all been said before so I won't rehash my disappointment too much. 

Except to say..

It isn't at all surprising to read a comment like that from Prof Ian Lipkin recently. This being in the context of his unreciprocated collaboration with the Kingdom's Deputy Minister of Health, Dr Ziad Memish...
We've gone our separate ways, and I wish him well
...which may also inform us about why the collaboration between the MOH and the World Health Organisation (WHO) produces such spartan data on MERS cases, at least when you compare the quality of data to that which China provide WHO on avian influenza A(H7N9 virus cases; a much larger undertaking involving a more populous State and many more geographic and political boundaries.

Friday, 10 January 2014

Why one watches the webs for the worst of the woes...

In an article on BAYTODAY.CA,written by @HelenBranswell, there is a fantastic quote that really defines why infectious disease bloggers, and public health professionals working through more official channels, get all fired up when they cannot have or find, information that could be used to help monitor or understand disease outbreaks. 

"We breathe the same air. We drink the same water. We fly on the same planes. And an infectious disease outbreak anywhere is a potential risk and threat to all of us," said Dr. Martin Cetron, director of the center for global immigration and quarantine at the U.S. Centers for Disease Control in Atlanta.

"And we just have to constantly pay attention and stay vigilant."

The influenza H5N1 death in Canada has and continues to generate a huge amount of interest. It's also generating no small amount of confusion over how the infection was acquired by this late 20-something East Asian female who worked in healthcare at Red Deer Regional Hospital. Apart from that, this infection also highlighted that when many eyes focus on a case, it is very difficult to keep a patient's details, work, travel routes and trip details, secret for long. 

Does intentionally withholding any or all of age, sex, date of onset, date of hospitalization, and perhaps a few other deidentified details truly hinder a globally connected world's efforts to uncover these details? Seems not. Whether those details hinder a patient's ability to remain anonymous I cannot say; I said other things about that recently though.

In the meantime, interested and involved professionals and amateurs alike use what information they have to hand to bend their minds towards seeking answers and making comments that might help solve mysteries like this. Because they try to help. For the benefit of all of us. I suspect, regardless of the communicative devices available to them and the extent of the interconnectedness in which they abided at the time, they always have and they always will.

Friday, 20 September 2013

In a nutshell: Why MERS-CoV data from Saudi Arabia is often limited....

From a Q&A with Dr Ziad Memish, Deputy Health Minister for the Kingdom of Saudi Arabia written up by Ellen Knickmeyer of the Wall Street Journal...


“I know that there are some newspapers and news agencies requesting more detailed information. As a public-health officer, I feel strongly this is not acceptable. The news media is not the place to detail the critical information about patients or how many people in the same family got infected, or where they live.

Speaks for itself really.

It does somewhat miss the point of what many have been asking for (including me). The data would obviously have to be deidentified. A standard practice in for research epidemiology publications and a frequent (usual?) requirement by ethical panels that approve your projects. At least in some States. That would mean leaving out patient and family names (as has been happening to date with MERS, but not so much with H7N9 where too much private information was shared), hospital names and any household addresses.


His subsequent comments outline Dr Memish's view of a minimal publicly available dataset...

What needs to be given to the public is positive case, the age, the sex, the location and if there’s anything unusual about increased spread or a new event that has not been reported in the past.

This doesn't explain why it take so long to hear of a MERS-CoV death when the KSA has a daily-updated (at 5pm!), coronavirus-specific, public health announcement website. Presumably testing is slower than we thought or samples are not being collected for MERS-CoV testing often enough? Who knows? It also doesn't explain why data content varies from post-to-post.

Despite this, and I agree that patient details should be kept private, my list of details to help out global public health officials, amended from an posted earlier, is...

  1. A unique, continuous identifying code specific to this emerging virus
  2. Sex
  3. Age
  4. Possible exposures Occupation
  5. Co-morbidities
  6. Date of illness onset
  7. Town of illness onset [for internal and collaborative investigation]
  8. Town of acquisition acquisition [for internal and collaborative investigation]
  9. Date of hospitalisation
  10. Type of laboratory testing
  11. Date of laboratory confirmation
  12. Date of death
  13. Date of release from hospital
  14. Treatments/management
  15. Town of treatment [for internal and collaborative investigation]
  16. Relationships to any other cases

Monday, 2 September 2013

New MERS-CoV positives - is there a brevity competition going on...a shortage of electrons perhaps?

2 MERS-CoV POS, 26 and 19 years, released from hospital.

That is the only relevant text from 68 Google translated press release words on these 2 new cases posted on the Arabic language Ministry of Health website, Saudi Arabia. 56 words on the English-language site. I used half as many just explaining where it came from.

2 other cases were announced as positive and already discharged (the children of the 38M from Harf Al Batin, from where 1 of the cases above also tested positive) as well.

So much for being hopeful of a new era of data sharing on Friday. Must have thought better of it after the weekend.

So we're at 110 cases, 50 deaths (1 still unaccounted for) resulting in a fatal case proportion of 46.4%. That's about 16 cases reported since August 20th after a nearly 3-week pause in new cases being described. That's a rate of 1.2 lab confirmations reported per day

Not exactly setting the world on fire but it is worth considering what may be happening among other contacts; those perhaps not defined as close enough to test with PCR. If there are any of course. Hospital-based cases can be a great sentinel of an increase in mild respiratory viruses infections out in the broader community. 

My first source: Avian Flu Diary's article