Blog by Sumana Harihareswara, Changeset founder
Improve An Open Data Bill To Prevent Heart Attack Deaths in NYC
New Yorkers don't know where our nearest defibrillators are, so when people have heart attacks, we lose people we could save. A new NY City Council bill aims to open that data. We need your help to improve it and get it passed. Submit written testimony by 10am ET on Sunday, April 2nd.
If someone had a heart attack right next to you, could you get to your nearest automated external defibrillator, grab it, and use it within 3-5 minutes of their collapse? In some cities that's easier because they've opened their data about where public access AEDs are, so you can easily look up "where's my nearest AED" and know it ahead of time the same way you know where the fire extinguisher is. But in New York City those locations aren't publicly available.
There's a bill before the City Council that aims to change that, and we need your help to improve it and get it passed. And if you're going to submit written testimony to help, you need to do it by 10am ET on Sunday, April 2nd.
On average, when a New Yorker calls 911 because of cardiac arrest, emergency responders get to the scene in 10-11 minutes -- but for every minute defibrillation is delayed, the chance of survival goes down about 7-10% (American Heart Association, PDF).
AEDs save lives, especially when they're widely available in public places. Thus, there are various programs and laws in New York City & New York State either encouraging or requiring buildings/businesses/locations to have automated external defibrillators (AEDs) available for public use.
New York City Council bill number 0211-2004 was enacted as Local Law No. 20 for the year 2005 (amending Chapter I of Title 17 of the New York City Administrative Code to add a new section § 17-188), mandating AEDs in some public places. (You can navigate to this law by searching for "defibrillator" in the New York State law search, which includes the NYC Administrative Code; here's a less official American Legal Publishing link.)
Per the New York State Department of Health advisory on Public Access Defibrillation, each regional emergency medical services council holds a PAD registry. In New York City, that is NYC REMSCO. The REMSCO shares this with 911 operators. If someone calls and reports a cardiac arrest, the 911 operator can advise callers if there's a PAD at or near the address they're calling from. The dispatcher can say: "You keep doing CPR, but if someone else is there who can run a block to [x location], they can grab their AED." And if that gets the AED to the patient 2 minutes before emergency paramedics get there, that gives them a significantly higher chance of survival.
But we, the public, can't access that PAD registry -- not even a redacted version of it that only has the specific street addresses of the AEDs.
AED logo: heart with lightning bolt down the middle
The last publicly published map of PAD locations in New York City was a low-resolution illustration in 2006, in a one-year-later report after Local Law 20 was enacted in 2005. Per that 2006 report, NYC REMSCO has "an online registration system intended to facilitate registration, reduce paperwork, and improve the scope and accuracy of future reporting to City Council", and this was developed in coordination with New York City Department of Health and Mental Hygiene (DOHMH). So it should be easier to publish that data digitally!
In 2017, I filed some Freedom of Information requests to get some more of those annual reports from DOHMH, and published them on my website. Again, they include coarse-grained illustrative maps of AED locations but not specific addresses.
Public Access Defibrillation Sites in New York City 2010. Data source: NYC REMSCO May 31, 2010; map prepared by DOHMH CVD Prevention and Control Program. A map of dots showing the neighborhoods in New York City that have PAD sites.
I mentioned this problem to City Councilmember Costa Constantinides, who filed a bill, Intro 1686-2017, which would have required DOHMH to make an online AED locator tool:
an online tool for locating nearby automated external defibrillators...
The department shall make available on its website a tool that provides a user with the location of the three public places that are nearest to such user that are required to have an automated external defibrillator pursuant to this section. Such tool shall provide users with directions or a map to each such public place and shall include a conspicuous notice informing users that, although such public places are required to have an automated external defibrillator by law, this does not guarantee that each such place has a defibrillator. The city is not liable for any deficiencies or inaccuracies in such tool.
Bill 1686 never made it out of the Committee on Health.
I actually think that asking DOHMH to make a locator tool isn't the best approach here. New York City has an open data portal with tons of useful data sets, run by the NYC Office of Technology and Innovation. For instance, here's the inventory of AEDs at New York City parks. If DOHMH takes its existing PAD registry and loads it into NYC OpenData, then public, private, and nonprofit people and groups can make and publish locators.
And, once the data is open, there's so much we can do. Other agencies, activists, local nonprofits, and schools can grab that data to annotate local maps and make translated handouts for specific neighborhoods -- Bengali in Jackson Heights, Chinese in Flushing, and so on. We can find AED deserts and go to local businesses to say: hey, there's a tax credit for buying an AED, would you mind getting one and putting it on the PAD registry? Someone could make a "gotta find 'em all!" mobile game to incentivize New Yorkers to take selfies with AEDs. Google and Apple could grab the data so if you yell "is there an AED nearby?!" into your phone, it could tell you.
Last year I mentioned the PAD registry problem to a legislative staffer at Shekar Krishnan's office, and Krishnan and his staff decided to make this a priority! Councilmember Krishnan introduced Intro 0814-2022 in November, and spoke about it in a Committee on Health hearing yesterday. Video's available (sorry, auto-play); I haven't watched it all but Krishnan discusses the bill from about 21:00 to about 25:45. No transcript is up yet; I am making a partial transcript and may post it here in the comments. [Edited April 12th to add: a PDF transcript is now available, plus a PDF of all the submitted written testimony.]
The short description of the bill: "A Local Law to amend the administrative code of the city of New York in relation to requiring an annual report indicating the quantities and locations of automated external defibrillators placed in public places".
The change it makes is a very small one: it requires DOHMH to publish more of those reports that include "the quantities and locations of automated external defibrillators placed in public places". I've asked Krishnan's office how we can ensure that passing this bill will open the specific street addresses of public access AEDs from the PAD registry. They've told me that they will consider incorporating relevant language into the text of the bill "as we continue through the amendment process and hopefully move this to a vote."
Here's the committee's report (a Word document published before the hearing) on the bill and several other related bills under the umbrella of "Improving Access to In-Community and At-Home Health Care". This bill is discussed in Part II (Background), Section b (Access to CPR Training and Medical Devices in Public Places), and in Subsection i (AEDs) and Part III (Legislative Analysis), Section c (Int. 814-2022).
You have a window of 72 hours after the hearing to submit written testimony on a bill heard in that hearing. The hearing was March 30th at 10am, so you have till Sunday, April 2nd, 10am Eastern Time to submit it. (Krishnan's office would have given me a heads-up before the hearing, but stuff moved fast and they hadn't expected it could make it onto the agenda for yesterday.) You do not need to be a New York City resident to submit testimony! If you have expertise in health education or open data more generally, or can do 30 minutes of research about your area, you can help. You don't have to write a lot! A paragraph is fine.
Put any or all of the following in your written testimony:
At https://council.nyc.gov/testify/, choose "Submitting written testimony" for "How will you be testifying?". Choose "Thu, Mar 30 @ 10:00 AM - Committee on Health" in "Select a Hearing", and put down "Int. 814-2022" as "subject of testimony". You'll upload a DOC, DOCX, or PDF file of up to 10 MB.
"Please be advised that any personal information you provide in your comment or testimony will be publicly available and will remain part of the public record." For "phone number" I'm using my public number, (929) 255-4578. If you decide to also use that, please let me know.
Contact your local councilmember and ask them to co-sponsor Int. 0814-2022.
If you know someone at DOHMH, or at NYC Office of Tech and Innovation, or at NYC REMSCO, please reach out to them about this bill and ask whether it's on their radar and what they and their colleagues think of it.
My dad died of a heart attack. Lots of people die when AEDs could have saved them. And this is more important than ever: COVID has weakened a lot of people's cardiovascular systems and led to more heart attacks. Let's get this data where more people can get at it.
02 Apr 2023, 10:19 a.m.
I submitted my testimony this morning. Here it is as a 868 kB PDF. I wrote 8 pages, and appended 2 documents written by others. First is "A Race Against the Clock: Out-of-Hospital Cardiac Arrest", a 2-page fact sheet published in 2020 by the American Heart Association. Second is DOHMH's 2010 "Report to City Council on Local Law 20 of 2005: Public Access Defibrillator Use In New York City" (28 pages).