Thread by @Farzad_MD, 1/ Reading this history of syndromic surveillance from @chrissyfarr brought back a [...]

1/ Reading this history of syndromic surveillance from @chrissyfarr brought back a lot of memories

"These ‘disease hunters’ developed a novel technique for tracking pandemics after 9/11, but lost funding right before COVID-19" https://www.cnbc.com/2020/04/04/syndromic-surveillance-useful-to-track-pandemics-like-covid-19.html?__source=sharebar|twitter&par=sharebar">https://www.cnbc.com/2020/04/0...

These 'disease hunters' developed a novel technique for tracking pandemics after 9/11, but lost...

Nearly two decades ago, when 9/11 spurred governments to invest in fighting bioterrorism, a group of disease experts figured out how to track pandemics using data from emergency rooms with a techni...

https://www.cnbc.com/2020/04/04/syndromic-surveillance-useful-to-track-pandemics-like-covid-19.html?__source=sharebar|twitter&par=sharebar

2/ In 1999 I was an EIS Officer @CDCgov @nycHealthy working under the great Marci Layton & Annie Fine -who are there fighting COVID19 today- when I got involved with the City& #39;s bioterrorism preparedness program

The first aha moment was the idea of monitoring ambulance dispatches

3/for the first time, we had a real-time (if rough) finger on the pulse of the City& #39;s health, could clearly see spikes in ambulance dispatches for flu-like illness days to weeks before news stories about how ERs are slammed.

I was so excited I started a company! (went nowhere)

4/ September 11 and the Anthrax attacks changed my life, like so many others

My friend Rick Heffernan and I worked literally around the clock for weeks to set up feeds from EDs, and wrote the first code for analyzing them for clusters

I miss him so much

https://madison.com/news/local/obituaries/burch-heffernan-richard-thomas/article_58df72ca-8355-11e2-bae9-001a4bcf887a.html">https://madison.com/news/loca...

5/ And there were others "misfits" across the country working on similar ideas- who were looking at the explosion of available electronic data, and the application of new statistical methods to this new generational challenge

We got together and called ourselves an institution.

6/ In 2002, with @jpavlin ( @USAMRIID) as co-chair we created the "International Society for Disease Surveillance", held the first of 17 Annual Syndromic Surveillance Conferences, published a journal dedicated to the emerging field.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3456537/pdf/11524_2006_Article_191.pdf">https://www.ncbi.nlm.nih.gov/pmc/artic...

7/ This 2003 NYT article from @perezpena is still gripping, and echoes

"In mid-March, a corner of Queens suffered a sudden, sharp increase in the number of people with fever and trouble breathing, turning up mostly at one hospital& #39;s emergency room....

https://www.nytimes.com/2003/04/04/nyregion/system-in-new-york-for-early-warning-of-disease-patterns.html">https://www.nytimes.com/2003/04/0...

8/ this echoes too
"Congress is considering giving cities and states up to $425 million for "health surveillance." Still, public health experts say that would represent only a down payment on fixing what they describe as a woefully underfunded system"
https://www.washingtonpost.com/archive/politics/2001/11/24/in-new-york-on-alert-for-bioterrorism/5c031ce4-7934-4971-9af4-5dc5d3ddbd36/">https://www.washingtonpost.com/archive/p...

9/ By 2004, I was thrilled to see this new field gaining credibility, and attention, and funding

The CDC even recognized it as a fundamental new tool in the arsenal of public health surveillance (these slides are classic CDC style BTW)

but trouble brewed
https://studylib.net/doc/15299385/overview-of-syndromic-surveillance">https://studylib.net/doc/15299...

10/ It was a battle between a powerful @CDCgov under GWB/Julie Gerberding who wanted to establish a national program "Biosense" and the band of state/local innovators who had started this, and felt strongly that it should remain in local hands

I thought it was like Star Wars

11/ At a national meeting I laid out what I thought was a devastating critique of hospitals reporting directly to CDC

"it& #39;s not your job, you can& #39;t investigate, and your analysis sucks"

Ironically, my slides are in perfect accordance to the CDC stylebook
https://slideplayer.com/slide/15074208/ ">https://slideplayer.com/slide/150...

12/ We set up an alternative vision: Distributed Surveillance Taskforce for Real-time Influenza Burden Tracking and Evaluation (DiSTRIBuTE)

funded by @polsiewski @SloanFoundation & @MarkleFdn (who were fighting similar battles on national security front) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959914/">https://www.ncbi.nlm.nih.gov/pmc/artic...

13/ We& #39;d have the same analytic approaches, w some localization (eg local terminologies), running on line-level datasets maintained by state/local Health Departments, and aggregate results.

Look at this amazing visualization of flu across 8 jurisdictions http://currents.plos.org/influenza/article/applying-a-new-model-for-sharing-261w1jjdm6zrb-5/">https://currents.plos.org/influenza...

14/ Carol Diamond and the great @cshirky and I wrote in 2009:

"we propose a new model for analyzing data on populations, which takes distributed and dynamic access to information for granted without exposing the details of the underlying data"

https://www.healthaffairs.org/doi/pdf/10.1377/hlthaff.28.2.454">https://www.healthaffairs.org/doi/pdf/1...

15/ But by then I had joined the federal government, to help @DavidBlumenthal run programs and policies for implementation of the HITECH Act @ONC_HealthIT and my old boss @DrTomFrieden was running the CDC.

We had the opportunity to set it up the right way now-and we did, kind of

16/ For Meaningful Use we had hospitals report syndromic data to State/Local health authorities not the feds.

But many health departments (informatics largely defunded a decade after 9/11) couldn& #39;t accept it

CA gave hospitals exemptions from the reporting requirement

https://abs.twimg.com/emoji/v2/... draggable="false" alt="🤦‍♀️" title="Woman facepalming" aria-label="Emoji: Woman facepalming">

17/ So folks like @jim_daniel and @kasshout (now with @awscloud) and Mike Coletta helped create a shared architecture at CDC - a catchers mitt that over 70% of hospitals are reporting into - but state/Local Health retain ownership of their "locker"

https://abs.twimg.com/emoji/v2/... draggable="false" alt="🇺🇸" title="Flag of United States" aria-label="Emoji: Flag of United States"> https://www.cdc.gov/nssp/participation-coverage-map.html">https://www.cdc.gov/nssp/part...

17/ So folks like @jim_daniel and @kasshout (now with @awscloud) and Mike Coletta helped create a shared architecture at CDC - a catchers mitt that over 70% of hospitals are reporting into - but state/Local Health retain ownership of their "locker" https://abs.twimg.com/emoji/v2/... draggable=

https://www.cdc.gov/nssp/part..." title="17/ So folks like @jim_daniel and @kasshout (now with @awscloud) and Mike Coletta helped create a shared architecture at CDC - a catchers mitt that over 70% of hospitals are reporting into - but state/Local Health retain ownership of their "locker" https://abs.twimg.com/emoji/v2/... draggable="false" alt="🇺🇸" title="Flag of United States" aria-label="Emoji: Flag of United States"> https://www.cdc.gov/nssp/part..." class="img-responsive" style="max-width:100%;"/>

18/ The system is working really well as far as I can tell- is able to pick up COVID-related increases in ED visits nationally, and I think is being used in state and federal decision making, though I wish there was more transparency around that

It& #39;s a model for state-fed collab

19/ It drives me nuts to see this 20 years of institutional memory forgotten when I hear that folks are running around trying to figure out how to connect healthcare systems to feds directly, while state/local public health struggle with connections separately

We have the answer

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