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

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