Data, Data, Data

One of the major defects in the current COVID outbreak is the lack of truthful and/or usable data. The major issues are:

1. Timeliness: This is a broad category of time related issues. Such as:

a. when was the patient first requesting a test
b. when was the test scheduled
c. when was the test performed
d. when were the test results finalized
e. when were the test results reported

2. Demographics: This is a description of the demographic profile of the patient. Such as:

a. Age
b. Occupation if any
c. Race
d. Gender
e. Ethnicity
f. Family setting
g. Income
h. Education

3. Medical History: This is a history of patient and family

a. Pre-existing conditions
b. Presenting symptoms
c. Family history
d. Patient history

4. Testing Protocol: Details on what tests etc

a.  Test Assay and Vendor
b. Test Location
c. Test Laboratory
d. Test False Negatives and Positives
e. Person doing test
f. Location of Test analysis

and so forth. Now Technology Review looks at this issue and suggests a Government controlled review. They state:
 
Getting this data means going to the health department website of each jurisdiction in question (and the neighboring ones), pulling up the information separately, and then trying to collate it all. You’ll have to pray the information is up to date, since there’s no guarantee. And you might even have to contact the departments directly and make a special request if you’re looking for numbers and information not readily available on their websites. The entire process will be a long, drawn-out, frustrating affair. And you might not even get what you want. Why? Because public health is a decentralized system in the US. In the case of covid-19, there’s no consistent standard for how states should collect and report the data. Individual states and their own health departments decide how they want to handle testing—including how to collect, organize, and report the results. And that can be a problem....Most experts agree that in an ideal situation, the federal government would lead the management of public health data for a crisis like this—but that is highly unlikely to happen. Given that some models suggest we’ll need to implement response measures against the pandemic into 2022, though, Miri doesn’t think it’s too late to push forward a national initiative. It’s just a matter of funding such measures, and persuading states to accept more oversight. That’s not always an easy sell, but the pandemic’s effects may have softened state officials up a bit. 

There is however an excellent alternative to a Government approach. My thought would be how the IETF works for the Internet. The Government continuously demonstrates gross ineptitude. What we need is an open, dynamic, transparent approach. The IETF approach is an excellent example. This way one would have an dynamic entity open to all comers and acting in a demonstrable dynamic and real time manner. One need look no farther than the complexities of the Internet and understand how it evolved withing the expanse of the IETF.

Notwithstanding, a common database is critical and the data should be open to all comers. There are many minds out there who can examine the data from a different and possibly beneficial perspective. Governments have demonstrated an inability to produce. Worse yet, the WHO has lost all credibility that no one believes anything they say or worse, whatever they say must be false. Likewise the CDC cannot produce or disseminate timely data. The MMWR is a classic example of a weekly report frozen in a political quagmire.