Join the Conversation at RespiraCon II
How can we do better next time? How can makers be more useful and productive? How can governments and funders support makers and others who show up to help? Let’s have the conversation around how we might be better prepared.
Robert Read of Public Invention is the lead organizer of RespiraCon II, a free event which takes place online on Saturday/Sunday January 29 & 30th. Leith Greenslade of the Every Breath Counts Coalition is the keynote speaker for the event. RespiraCon II seeks to start a global conversation around the response to the next pandemic or public emergency, and Robert and Leigh join me on Make:Cast to give us a preview of the program.
On this episode of Make:Cast, Robert talks about an Open Source Medical Technology Manifesto that he and others have drafted as well as the goal of building a movement to create open source library of designs for medical devices. In other words, we need “open, shareable, repairable” medical technology. Leith works with government organizations and she believes they need to be prepared to take advantage of the maker movement to solve problems that these institutions have failed at solving themselves.
Robert: So RespiraCon is an attempt to create a global conversation for how we can get the maker movement to become a part of a global project to create open, shareable and repairable medical technology.
In the pandemic, we saw that was absolutely necessary due to supply chain failures and some other problems. It wasn’t terribly successful except in the realm of personal protective equipment where it really saved a lot of lives. And of course built lean things like ventilators and oxygen concentrators a little bit harder.
So today I’d like to talk about, and what we’d like to talk about at RespiraCon, which is a free virtual conference, is how makers and humanitarian engineers and academicians can get involved in this global project. Even though it’s the case that building medical equipment requires a lot of FDA regulation, a lot of legal issues, makers have an essential role to play at the beginning of that process. So on January 29th and 30th, we’re hosting this free virtual conference co-hosted with Rice University and the Every Breath Counts Coalition and a few other people. It’s free to register. It’s going to be both Saturday and Sunday morning if you’re in the United States and we’ve got about 18 speakers who are going to be giving short talks and panels.
And so forth, but we’re really trying to create a global conversation around the idea that we need to start making open source medical devices. And that requires the kind of people who are entrepreneurs, who are going to be building firms to make these, but it also requires engineers and makers to do certain things.
And that’s what we want to be talking about. So as part of this conference, we’ve created the open medical technology manifesto. And in a nutshell, it says that we believe open shareable repairable medical technology will make us all healthier, in part, because if we allow, for example, COVID 19 to run rampant throughout the rest of the world, even if we can stop it somewhere else, we’re creating a disease reservoir which hurts all of us. Leith Greenslade runs Every Breath Counts Coalition, and she’s going to be the keynote speaker for RespiraCon. She knows more about the global demand for medical devices than anybody in the world.
Today, we have a lot of problems in the United States, but oxygen supply is usually not one of them. However, on a global level, that can be a big problem. So let me introduce Leith Greenslade from the Every Breath Counts Coalition, and maybe she can talk a little bit to the global need for medical devices now.
Leith: Thanks, Rob, and thanks to Public Invention for putting on this essential conversation. So I am not from the maker movement. I am from the other side. So the traditional official kind of organizations, governments, UN agency that have tried and largely, I think, failed to mount a successful global pandemic response.
I’ve been at this now for more than two years, and I’m a firm believer that we would have done so much better if we had a globally organized, effective well-resourced maker movement in every country that was affected by the pandemic. To be sure the maker movements that are out there have stepped up big time.
They have operated 24/7. They’ve done some amazing things, but it’s been fragmented as they admit and really relied on serendipity and whether they had a strong connection or not, too many sort of things left to serendipity. So I’ve come to the conclusion entering the third year of the pandemic. We have 5.5 million official deaths. We think it’s probably five times more. And Omicron is raging, infections now and more than 300 million. So how are we going to end this thing and then prepare better for the next one? I would not want to go into the next pandemic without major changes to the way maker movements are integrated into national systems of pandemic preparedness and response.
And I’m really hopeful. RespiraCon II, is like a milestone moment when we can shift that conversation and bring the right people around the virtual table and make some of the big changes that need to be made from national government to United nations, to very local, we need changes at every level to really leverage this awesome and huge community of people that can make a major difference.
Robert: That’s a brilliant statement, Leith. Let me point out that thousands of engineers tried to help at the beginning of the pandemic, but because it was disorganized, there weren’t teams that had already created projects where you can nucleate around ideas, a lot of that energy was not used as efficiently as it could have been.
And so what part of what we’re trying to do is to move to a world where it’s easy for a maker or an engineer to sign onto to a project that they know is going to be meaningful and impactful, even if it’s a longer term project then they’re used to dealing with
Dale: So let’s talk about why this manifesto is a key piece of that future. It’s what we realized didn’t exist at the time. Robert’s Public Invention group began a list of all the open source respirator projects that were out there at the time. And I don’t know how many, it was over a hundred at one point. And some were able to make a lot of progress. Some, we were very enthusiastic at the beginning and stalled because of things like what should it actually do? And what are the requirements? We didn’t have an open, shareable, repairable environment around respirators, did we?
Robert: And you of course created Plan C, which was an attempt to get makers to be able to fill the gaps on some of those things. What we would like to do, and other people have articulated this vision as well is to have a library of open source medical designs for many common medical devices. Now, unfortunately I have to talk about FDA stuff, which is a little complicated. That does not mean that anyone can make that device and market it as something that would save lives. You’re still gonna have more or less traditional firms doing that.
But by having a library of well-tested designs that are completely transparent because they’re completely open source, we democratize that function. Another crisis is going to arise in the future, whether it’s smoke inhalation, another pandemic due to a virus or some other problem, what we would like to do is to democratize this whole business so that local firms who are not necessarily subject to the same fragile supply chain that have their own supply chain, and so can do different things, can immediately begin making medical devices if it becomes necessary.
The traditional way of making medical devices works fine if you have a stable demand. We had a global crisis that created an acute demand that could not be met, but we know that’s going to happen again. And it’s not over right now for the coronavirus. What we’re trying to do is a vision that I think most makers can understand a library of open source designs, which are very well tested and well understood. Not so that those things can immediately become devices, but so that firms and non-profits can turn those into life-saving medical devices.
We’re trying to make a cultural argument. It’s now well accepted that open source software works and is very effective. We haven’t yet shown that for open source medical devices, but I think we can change that. Right now, grant making organizations like the large foundations and the non-governmental organizations are not giving very much money to makers and humanitarian engineers. They may be giving some money to universities, but they’re not really funding these projects.
And I think if we can prove that this is an effective way to augment the entire human capacity, to be more resilient, we can convince those organizations to start giving relatively modest amounts of money. Because those organizations are happy to get millions of dollars to provide medical equipment right now to a place that needs it.
If they gave just $1 million to humanitarian and engineering organizations that already exist, the research impact of that would be very high in the long-term in my opinion. And that’s one thing we’re going to ask for at RespiraCon, not the money directly, but that we have a conversation about how we can change the way we’re doing that research.
Leith: Let me give you an example, a concrete example, Dale. So when COVID hit, the international agencies, like the UN and the governments, like the U S and European governments, we wanted to help those countries, turned around and bought massive quantities of Chinese oxygen concentrators, maybe 600, 700 bucks a pop, and then tried the arduous task of shipping them or flying them into Africa.
Now that at huge expense. These things arrived often without a manual, certainly without any kind of technical support. Sometimes they were not even opened. Sitting across Africa are networks of makers, really bright, young graduates of engineering schools, biomedical engineers who were desperate to be able to make the stuff locally. They didn’t want to depend on expensive imports. They wanted, they felt and believed they could make it locally or cheaper and actually suited to local conditions. These concentrators were made for Northern markets. Africa is hot and humid, but then there was no support for them to be able to do that.
So they sat there and watched this stuff being flown in inappropriately, overpriced, with no support for them to build from scratch. So it’s not as if we’re starting with nothing here, the people are there. The makers are out there tinkering in their sheds or their offices. They’re all there.
And if we can just mobilize them, I know we can get a much more efficient distribution of medical devices and this one is about respiratory, but the next pandemic could be about something else entirely. But the people, the makers of there, we just need to enable them with the right kind of financing, connections, support structures. And that’s what frustrates me is when I see us doing really stupid, expensive things that at the end of the day, don’t save lives.
Dale: This is a community that is starting to identify itself. And starting to see what it needs and how it needs to talk to other groups. And then perhaps be in a position where other groups can reach out to it. So this is still early.
Robert, do you want to talk a little bit about who some of the speakers are, how you put the program together?
Robert: Yeah, sure. Leith is the keynote speaker, the opening keynote. And we have a fine closing keynote speaker, who’s a physician who’s done a lot of work in low-middle income settings. But basically what we tried to do on Saturday morning for three hours. And then we’re having, by the way, a live demo of various devices that people have made, it is to start with the demand, which Leith knows a great deal about. And then think about we’ve organized it as the life cycle of a device. So it starts with universities and we have Dr. Maria Odin of Rice Oshman Engineering Design Kitchen talking about the development of devices. And then we talk about supply chain management in particular, which we know has been a problem.
And then we’re going to have a panel. And we specifically have some people who don’t agree with this in order to make an interesting panel. We’re going to talk about the issue –can open source help? Is open-source really ready to be helping this particular problem? And then we’re going to talk about things that were done by the open source community, particularly around personal protective equipment. And then we’re going to have a live showcase.
On the next day, we’re going to talk about some very thorny issues. We’re going to talk about regulatory issues involving medical devices, which are very different than your average project, which is published in Make: Magazine, usually doesn’t have to deal with that.
We’re going to talk about entrepreneurship. We have a gentleman, Larry Kiliszewski runs an American firm that takes, tends to take things out of universities and open source design shops and try to turn them into commercial devices. And there are some issues involved there particularly with FDA regulation that have to be talked about.
And then I’m happy to say we have Debbie Aloyo who works specifically in Africa, talking about very specific needs. And then we’re going to be talking about regulatory compliance and testing. And I think testing is extremely important by people from the World Health Organization and Africa and people who are have experience in other parts of the world, like the Middle East working on that. And then we have a legal scholar, Jorge Contrarez talking about open source. I’m going to talk about my own project and a new open source license designed specifically to pry open FDA applications so that people can see FDA applications. And then we’re finally going to close with someone who’s done a lot of work in the field around these issues, a medical doctor.
At the same time in the back channels with Slack and some chat software called Social Hour, we’re going to encourage people to have conversations. We are organized as a bunch of speakers, but we’re really trying to encourage people at the same time the conference is going on to form connections and to have conversations and to ask questions in both the Slack and also this additional software.
Dale: Robert, can you give out the URL for those that might be just listening? And is there a registration in advance of the workshop?
Robert: Sure. You can Google this, but if you go to pubinv.org, that’s pubinvorg/respiracon_II , respiracon II, R E S P I R A C O N, underscore capital I capital I. Then you’ll find this and it leads to an EventBrite. It’s completely free. And you can read all about the speakers and the schedule and the live showcase there we’re going to be having.
Dale: I hope we can get lots of people to participate here. I had hoped really with the efforts that the makers made in this first couple of waves of COVID that governments and agencies around the world would say, okay, how do we structure this for the future? How do we take advantage of this and build on it? And I haven’t seen enough of that happening. So it doesn’t mean it’s not happening, but it’s not been that visible if it is happening. It’s terribly important. I know some of the folks that you have on the panel have been looking at this as an emergency type response where you really do need all hands participating in it. And it isn’t just let the experts handle it — we’ll take care of things. You need to recruit from different fields, and different groups to participate. So I hope this helps lay the groundwork for carrying this forward beyond COVID.
RespiraCon II is January 29th and 30th from 10:00 AM to 1:30 PM Central Standard Time. And that’s a Saturday and a Sunday. So I hope you can participate. Any closing thoughts, Robert?
Robert: Yeah. I’d like to say one more thing. The organizations like Public Invention and Helpful Engineering and Open Source Medical Supplies, Every Breath Counts Coalition, they need money. But one thing that we also need is leaders who are able to run a technical project that can eventually save lives. So if you’re hearing this message and your, let’s say an electrical engineer or a biomedical engineer, and you would like to run an open source project on a volunteer basis and lead a team that is going to make a difference. I would like you to contact me, come to RespiraCon, join the conversation because there is plenty of work for engineers and makers of all kinds to do to help out in this project beyond the financial needs and the policy needs that we also have.
Dale: Leith, any closing thoughts from you?
Leith: I would just say, I think the pandemics changed everything. We really are in a new world now. We’re not out of it yet. We don’t know when the next one will come. So we need new structures, new ways of working together. And after every catastrophe global, there’s a window of opportunity that you get to make some pretty transformational changes. This is one of many that need to be made.
So let’s take advantage of this window. Let’s make RespiraCon II the kickoff, but let’s spend the next 12 months at least putting in place what needs to be placed in every country to make sure the maker movement can do what it did. What was done today? 10 X in time for the next.
Dale: Thank you both. And I wish you a good luck at RespiraCon II. And thank you for speaking with me today.