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.

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.

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 to 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 collabortaive investiagtion]
8. Town of acquisition acquisition [for internal and collabortaive investiagtion]
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 collabortaive investiagtion]
16. Relationships to any other cases

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