Last week, we highlighted a TED Talk by Lucien Engelen, the founding director of the Radboud REshape & Innovation Center and the man behind AED4.US, a crowdmapping effort that aims to pinpoint the locations of all automatic electronic defibrillators (AEDs). We got in touch with Engelen earlier today to find out more about his ambitious project and to get an update on the recent developments.

Anton Root, Crowdsourcing.org: Can you tell us a little bit about yourself and your project?

Lucien Engelen, AED4.US founder: Aside from working in the medical innovation field, I’m also the head of the regional acute healthcare network. Doing that, I realized that nobody knew where automatic electronic defibrillators (AEDs) were.

About three years ago, there was a lot of talk about Google Maps and charting – putting points of interest into navigation systems in cars and smartphones. These two things just kind of came together. I assumed at the time that someone would have data about AED locations already. So we wrote letters to manufacturers, but they all replied that they didn't know. They have third party sales channels, so they don’t know where the AEDs end up. They actually told me it was a problem for them, because whenever there was a problem with the AED, they had a lot of trouble getting the apparatuses back for repair.

At that time I was also looking into what the internet was doing for healthcare, and one afternoon I thought, “Well, let’s give it a try.” I put out a call out on Twitter to find someone that could help me build a website and a mobile app. That was kind of the first test to see if Twitter could work for crowdsourcing that information. Within an hour, I got multiple responses from people who said, “Well, I can’t do it myself, but you should reach out to him or her.” I picked out three people who seemed to make sense to me and started calling them. One of them picked up. We sat down with a cup of coffee, made a design for the site and started in October of that year. After that, it took off.

It took off on one side. On the other side, however, I’m a little disappointed that media exposure in foreign countries has not yet led to an increase in the number of people who are looking for and submitting AEDs, given that this is a life-saving apparatus. It turns out that with people who have gotten on board, most of the time there is a story. “My father died of a heart attack,” or, “My brother suffered a heart attack a few weeks ago,” or somebody – a friend or coworker – suffered from heart disease, whether or not it was in an acute phase. This made me realize that, like a lot of crowdsourcing, it’s of low interest to people until they get connected to it in one way or another. You only react to something when it affects you, or you when you have extensive knowledge of the subject.

Luckily, there have been a few developments that give us a good way to launch into Germany. We’re talking to the NHS [National Health Service] in the UK. Two or three major health institutions in the U.S. are willing to get it set up. There’s also been a lot of interest from companies who would like to run it in their countries, but I want to keep it out of the commercial scene. There actually should be some kind of legislation, making it mandatory for people who own AEDs to list them. But there still isn’t.

I have a few questions going off of that. I’ll start with what you said about people caring about something only when it affects them. Do you think there is any way to change that mentality?

That’s an interesting question. No, I don’t think so. The reason is, healthcare, as a whole, is a low-interest field. People don’t care about diabetes until they suffer from it themselves, or someone in their family suffers from it. People don’t look for information on cancer until someone close to them begins to suffer from it. We all know that not being active is bad for your health. We all know that that smoking and eating a lot is bad for your health. Nevertheless, we do it, until there is a problem.

Last week, I published a DNA report so everyone can see what’s in my DNA and what problems I might run into in the future. The reason I did that was I wanted to see how people react to it. The interesting thing is that I get almost four times as many questions through Twitter direct messages and Facebook messages than out in the open. So, people are asking me about what I did and telling me their stories through messages on Twitter and Facebook, and they won’t react to the report out in the open.

Looking at those two things, I think it’s actually very tough to change people’s behavior unless we package it along with something like a challenge, which is what we’re thinking about. Find the Golden AED in the United States, and we’ll send you on a cruise, or something like that. There should be some kind of benefit, trophy. We’re also thinking of setting up a project on Kickstarter, and maybe that will also raise attention and bring people to the app. As you know, Apple will no longer use Google for its mapping software for iPhones and iPads. What you might also know is that a Dutch company, TomTom, will be providing the maps. We are thinking that maybe this could be a good time to get rid of a separate app and mold the AEDs right it into the navigation software.

Currently, we are thinking about how to make expand the database. In the Netherlands, we have over 17,000 AEDs. It is the biggest database in the world. There are several systems that I’ve seen, some from Asia, others from the U.S. But none of them exceed a few hundred AEDs outside of a specific area. With more attention, we see an increase in the number of app downloads, and also in the overall submissions of AEDs. A few weeks ago, a doctor in the U.S. talked about our app on his regional television show. I didn’t know about it – I found out when we saw a big boost in the number of AEDs submitted in that region. It proved that we need some kind of spark for it to take off in a region.

Do you hope to collaborate more with physicians and government agencies in order to bring more attention to your project outside of the Netherlands?

To be honest, we don’t know what works and what doesn’t. It seems to differ. In the Netherlands, we’ve gotten enough attention for now. Actually, nobody knows how many AEDs there are in the Netherlands. Some think it’s 25,000. Others tell me it might be 80,000. So, who knows? Maybe we got all of them already.

We would like to work with government agencies and organizations but also with people who sell these apparatuses. One of my goals is getting a little leaflet into every AED sold what would make it easy for people to submit the unit into our system. With that, we might get more attention. The other thing is that we should work with charities or fire departments, to try to make sense out of this. So, yes we want to promote collaboration.

In every country, we would love to have an academic medical center to act as a hub for us. We’ll provide the system – it’s worldwide and stable. It’s all about marketing in that specific country. I think it makes more sense to recruit a university in Hungary to market the database than to have some Dutch university do it. It’s not about money. We are paying for this from ourselves at present because we think it’s important to do. We are thinking putting it on Medstartr or Kickstarter to raise money to get a big marketing campaign. That might pop up one of these days.

Why do you think keeping it non-commercial is the best way to go forward?

In the Netherlands, there are two systems. There is one system owned by a commercial agency that has a fair amount of AEDs listed – I don’t know how many exactly. But they keep the information from the public; they only share it with people that have paid for classes. I think that’s an adverse way of doing this, and strange because AEDs were invented for laymen. I really think it should be a widely available commodity. It’s like charging people to have the nearest ATMs show up on a map. It’s insane – we’re talking about a life-saving apparatus. This should be open for everybody.

What about some of the logistical challenges that you have to deal with? Not every place that has an AED is open 24/7. What do you do to make sure all the information is there and that it’s all correct?

Two things. First off, when we ask for submissions of AEDs, we ask for opening and closing hours. So whenever you’re by a location that closes at five and it’s past five, the AED won’t show up.

Secondly, Dutch Royal Red Cross volunteers are validating all of the AEDs in the system. Very soon, within two weeks, we will announce a collaboration with a big charity organization that has 20,000 volunteers in the Netherlands. Every AED that is submitted you can find in the system, but the ones showing up in light green are not validated, while the dark green ones are. On your smartphone, you can ask to see only the validated ones. You can also see the unvalidated ones, since it does not make a lot of sense for people to submit an AED that doesn’t exist. There will be some of that, but as of now, we haven’t found any submissions that were purposely incorrect. We found ones that have been positioned on the left side of the road, when they should have been put on the right side, but none that have been submitted erroneously into the system on purpose.

Do you think as more people find out about AED4.US, some will try to mess things up? Or do you think it’s one of those things where it’s not going to attract fraud or pranksters?

That’s a good question. I’ve been in ambulance services for over 25 years, and I think it was 10 years ago that someone hit the vehicle. Up until then, an ambulance was like sacred ground. Nobody would mess with ambulances, or fire trucks, or police cars. Now, it’s a different world. So yes, with more attention and more people, these kinds of things will occur. That’s the reason, for us, to have everything validated.

Getting close to wrapping up here, I wanted to ask about crowdsourcing in the healthcare and medical fields as a whole. What do you think the potential is?

It’s a very small field. It will gain enormous importance over the next five to seven years, I think, not only in terms of information to be gathered, but also in terms of collaboration. Patients are the most under-utilized resource in healthcare. We don’t ask them or their families about how to cope with things. The internet gives us new means and new possibilities to gather better and more information very quickly. Just think of this could mean for research and healthcare. Research is being designed together with pharmaceutical companies, no patients are asked. What can the outcome of extensive research mean for the everyday life of patients? Pharmaceutical companies are not interested in that since they can’t make money from it. But with crowdsourcing, you can do a lot.