We Need a Zillow of Public Health

April 08, 2020 / Jay Leon

The US needs an automated data store for all things healthcare. It needs a Zillow of Public Health. The Gates Foundation is uniquely positioned to bring this about. Many people will say this is impossible. Here are some of the objections they will lob at the idea:

Objection 1: It is the CDC’s job / the CDC is doing it already / the CDC will do it now

The CDC has not done it in the past
The CDC is not doing it now
The CDC exists in a world where doing it will be very difficult
Homeland security has had nearly 20 years to do something similar on the security front and has not succeeded (consider their inability to track children crossing the border)

Objection 2: There are many regulations that make it impossible for a private foundation to collect and manage health data

The current crisis offers a temporary reprieve from many regulations
The current crisis provides the motivation to get it done now
The Gates Foundation’s contribution towards addressing the current crisis affords it a unique exemption from regulatory pushback
The Gates Foundation is best positioned to persuade the government, the community, and the public on the benefits

Objection 3: It is too hard, and will never be ready in time to make a difference

Yes it is hard and a few years ago it might have been impossible, but new tools and techniques will enable us to see the initial results in just weeks
It is the 3,142 counties and over 8,000 hospitals, each with different governance, systems and capabilities that drives this need for an automated central data store
Even after the initial wave has passed, efficiently collected and trusted healthcare data will be essential for bringing the economy back and managing future waves without resorting to closing down large portions of the country.

Objection 4: The health insurance lobby will kill it (many, many reasons they would find it threatening)

They could be persuaded that equal access across the health insurance industry to high quality health data would be better than their current situation
They might prefer to support a neutral 3rd party with the reputation of benevolence instead of being subject to data poorly managed by the government, or worse yet, intentionally mismanaged by the government.

Benefits of This Approach

A Zillow user can use a simple map to access information about any house in the United States. The last actual sale price is listed along with other specific facts about that house. As a result, not only could Zillow tell you exactly how many houses sold last month, but it could give you a complete list of them. Zillow does this by aggregating the property records from every single county in the country. For the purpose of this discussion, let’s call this approach of capturing every single record the complete data approach.

The healthcare industry has never adopted the complete data approach. In healthcare, data is sampled and statistical methods are applied and results are calculated. This is why the CDC’s best guess as to the number of flu deaths per year range from 12,000 to 61,000. The CDC is not tracking each case, it is sampling some data and analyzing it. If there was a complete data system for healthcare, a Zillow for healthcare, you could know exactly how many death certificates issued by county coroners listed flu/pneumonia as the cause of death. In addition, you would know the age, gender, race, and location of each case. The necessity of this is obvious in the current pandemic environment. Contact tracing at scale is not possible without a complete data approach.

Great Efforts Being Made by the States

State governments maintain systems tracking disease in their jurisdictions. Washington State is no exception and is using its system to track the coronavirus. You can see the results here. This is not an attempt to malign the good people working for the State of Washington. I have no doubt they are working around the clock to assemble the data. To their credit, they may be adopting a complete data approach, tracking each case of covid19 in our state. There are several signs that the systems they are using are not up to the task. The note that the last 4-7 days may be under-reported illuminates the struggle the state is facing to get the data into the system. The note that 15% of the cases are not associated with a county is also a red flag. It also may be true that new cases are 40% less likely to start on weekends, but it does not seem likely, and ultimately, it does not seem likely that the state will be able to sustain the current manual data management process.

Next Up at the Gates Foundation

First let me say, I have no knowledge of what is going on inside the Gates Foundation. I know they are an organization that uses data to drive decision making, and they attract the best talent in data science. I would love to know if the Gates Foundation has the appetite to become the trusted center of a complete data approach in US Healthcare. Because we need a Zillow of Public Health.