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.

1. The context: where this data is and why we need it
2. The current bill: Int 0814-2022
3. How you can help (the clock is ticking)

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.

The current bill: Int 0814-2022

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).

How you can help (the clock is ticking)

Written testimony by Sunday morning

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:

1. Anybody: AED/PAD open data examples from other places. Look up whether your city, region, state, or country has published its PAD registry. If so, what fields do they publish in their dataset, and how have the city and others reused, republished, and remixed that data?
2. Anybody: public health education. What works to help people learn first aid facts (from your personal experience or from research and expertise), and how could open PAD data help? Especially if we can help address historical inequities (poverty, race, gender, etc.). Bonus: analyze data on leading causes of death in NYC.
3. Anybody: AEDs can be used effectively without training. During the hearing, a DOHMH assistant commissioner mentioned concerns that AED users need training to use AEDs effectively. But bystanders (even untrained ones) who use AEDs on victims can save lives; "Application of an AED in communities is associated with nearly a doubling of survival after out-of-hospital cardiac arrest." Share that and similar research.
4. Anybody: NYC REMSCO already has this data. In the hearing, DOHMH said they don't have this data; they do have access to it via NYC REMSCO. Here's what I've learned about the PAD registry through Freedom of Information requests.
5. Anybody: open data publication advice. Suggest text for amendments to the bill, or implementation advice for DOHMH, to get them the data from NYC REMSCO, ensure we open appropriate data, and reduce unnecessary labor by DOHMH staff. Check out previous open data laws in NYC for model language, as well as New York State's open data handbook and the US's Digital Accountability and Transparency Act of 2014 (PDF).
6. New Yorkers: where's your nearest AED? Especially if you don't know and wish you did.
7. New Yorkers: personal experience. Mention if you or anyone in your life has suffered from cardiac arrest, especially if AEDs helped or would have helped.

Filling out the form

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.

New Yorkers: contact your rep and work your connections

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.

We can save lives

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.