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Peter Semmelhack, Founder and CEO of Bug Labs, sent us the following piece on creating an open source movement in health care technology. We thought it was interesting and something MAKE readers might want to chew over and chime in on. – Gareth


This is my first attempt at putting into words what I’ve been contemplating for several weeks, so you’ll have to forgive me if it seems a bit rough around the edges. But I’ve learned that when an idea bangs around in my head long enough, it’s usually a good idea to share it with others and either start a larger discussion or euthanize it. So here it is. Tell me what you think.

I believe we need an open source movement dedicated to health care. In essence, I want to rally the same fanatical zeal that has helped build some of the best, most complex software systems (LAMP, etc) ever devised to help address some of the world’s thorniest health care problems. I understand that’s a very easy thing to say and enormously complicated to actually do, but I’ll try to provide a simple example of how I think we could start. After all, open source as we know it today did not start with Linux.

Right now, if you have someone in your life with Type 1 diabetes, I bet it’s safe to say that you’d want notification (email, txt msg, IM, etc.) if he or she experienced a life threatening low or high blood sugar level. You’d especially want to know if they experienced one of these events and then fell down. It’s also a safe bet that you know getting this type of alert is virtually impossible today. There isn’t a device or gadget you can go buy that provides it. Building a wireless glucometer with an integrated accelerometer would not be too hard technically. In fact, I know a few people who could hack it together in a week.

The same could be said about a device that helps monitor the breathing of kids with juvenile asthma, or the whereabouts of someone suffering from Alzheimer’s. I could go on, but you get the point. There are hundreds, if not thousands, of specific (and specifically precise) tools that could be developed to help everyone lead healthier lives, and help communities take care of one another. If you look at all the active communities devoted to open source software – games, music, programming languages, etc. – I’d like to hope that it’s not too far a stretch to believe we can inspire the same energy and passion around improving the health and well-being of others. Think of the benefits associated with groups worldwide sharing their discoveries, methods and processes to achieve better results. This is not new territory. It happens everyday right now with FOSS communities.

One of the biggest hurtles is economics. Building these types of systems are expensive. But maybe there is a way address it. There are approximately 1M children suffering from juvenile diabetes in the US (29,000 new occurrences each year). If the community could design, build, and certify an open source prototype device that could potentially reduce mortality by even 5% per year, you would have a huge impact. Potentially, the Juvenile Diabetes Research Foundationa (JDRF) could sponsor its manufacture and sell it/give it to any/all sufferers. Assuming a reasonable price for making 1M devices (say $90 –> $90M to equip every child with a device, though, of course that wouldn’t be necessary) it would be within easy reach of any number of foundations and/or government programs. Or sell it at a profit with the proceeds going back to JDRF. Communities have worked this way in the past. Why not apply it here?

This is just one example. I’m sure there are better ones. But the point is, you could make the same case for virtually any health issue. The key to living longer, healthier lives, and lowering the costs of providing care is via better information. Getting better information is what good tools are designed to do. I’m arguing that we should explode the creation of these tools. But rather than rely solely on the world of business to lead the charge, why not organize and energize communities of hackers to create the technical foundations for a health care revolution unlike anything we’ve seen before? It can’t be any more complicated than hacking a Linux kernel ;)

P.S. For a list of some of the activity going on now around health care and open source, check here

Gareth Branwyn

Gareth Branwyn is a freelancer writer and the former Editorial Director of Maker Media. He is the author or editor of a dozen books on technology, DIY, and geek culture, including the first book about the web (Mosaic Quick Tour) and the Absolute Beginner’s Guide to Building Robots. He is currently working on a best-of collection of his writing, called Borg Like Me.


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Comments

  1. eyepokerouter says:

    In the case of many medical devices, hacking or modifying it would make it no longer FDA approved. The new device would need to be re-approved by the appropriate means. This is a relatively large hurdle to consider as well.

  2. David Van Sickle says:

    Peter – Great essay. This is exactly the motivation and rationale behind our project at the University of Wisconsin to develop a very low cost, open source spirometer (http://openspirometry.org).

    These devices are routinely used to measure lung function in wealthy countries, but almost nonexistent in lower-income ones. We believe that we can bring a robust model to market for somewhere around $50, or approximately 10-20x less than their current retail price.

    In any event, it has been a productive way for a team of engineering students to apply their growing skill sets to a challenging gap in global health. Of course, we’d really welcome participation from the Make community, too.

    Thanks for drawing attention to the potential for open hardware in health technology. Hopefully we’ll soon have an inventory of active projects to rival that list of open source healthcare software.

    -David Van Sickle

  3. jacques says:

    Awesome idea. Some of the best soft/hard-ware were develop by hackers and the opensource community. The only issue I can see is a conflict like there is between MS(in this case pharmaceutical, etc) and the opensource community. One’s is establish and the other can have a hard time breaking through. Having said that it would get the development of medical technology, techniques, treatment into a rapid growth. The strength of open source is that instead of 20-200 minds working on the problem you have closer to 20000 to 200000 minds working on it. And a lot of those minds usually are already working in that field. It could also help developing countries get better tools and equipment than they have now for cheap(er).

  4. malweth.myopenid.com says:

    The number one health problem facing the USA (and a cause of other problems like Type-II Diabetes) is obesity. I’d love to see open source versions of the “BodyBugg,” for example. I’m sure there are other possibilities to be developed as well.

    This could be a difficult one to crack, though… fighting obesity is only partly physiological.

    1. Peter Semmelhack says:

      I love the idea of the BodyBUG :) I will put it on the list of applications to evaluate. Thx!

  5. Kevin McMahon says:

    When you get your prototype(s) to the point where they are ready for field trials let me know and we can help you work through the challenges of going from prototype to production including introducing it to our health plan clients who are slowly coming around to the idea of innovative approaches to patient self-care. We started with real-time blood sugar alerts (ie GlucoMON) for kids with type 1 diabetes at school back in 2002 so we know what the devil looks like in bringing the new stuff to market.

    1. Peter Semmelhack says:

      Kevin – thanks very much. I will definitely take you up on that offer!

  6. Chris Gosnell says:

    Just my US$.02,

    I see three issues to tackle, prevention, diagnosis, and treatment. ‘Open Source’ techniques may or may not help.

    1) Prevention of most large scale diseases is a measure to the ‘cleanliness’ of a society. Providing safe, clean drinking water is a first priority. This has, and will be advanced by co-operative (open source) technology.

    2) Diagnosis is more tricky. For all of the immediate health care needs, (not breathing, bleeding, etc…) we already have the technology and resources for this. I hope that the ‘lab on a chip’ devices will benefit from open source concepts to help ‘narrow down’ the diagnosis. This info may then be remotely analyzed if needed.

    3) Treatment is the most difficult. Most societies have the knowledge of basic plant resources to provide the basic ‘take two and call me in the morning’ basic health care. I don’t know that advanced drug treatments and/or implants will be ‘open sourced’ any time soon. Not only do you need to make the product/device, but successful application requires quite a bit of knowledge.

  7. cyenobite2 says:

    I applaud the effort. Not to be the party p**per here, but my first thought was the possible legal issues. Who would be held liable should one of these open source devices fail? Lots of issues to be worked out, but every journey starts with the first step (pardon the cliche). Perhaps along the same lines… CNC crutches? Makerbot prosthetics?
    I hope makezine will continue to follow this story – thanks for posting.

  8. Jeremy says:

    I’m as attracted by the idea of developing new and decentralized practices for developing health care, but I’m disappointed that saying “open-source health care” only seems to make people think of gadgets. Coming up with new gadgets is too easy. Create a platform for rigorous open-source clinical trials and other medical studies, and then you’re really on to something. As for FDA approval, who cares? One of the advantages of open-source is that it deprofessionalizes the result. If you want to use a treatment on yourself, whether it’s based on an open-source clinical trial or alchemy, that’s none of the FDA’s business. Regulatory requirements only affect professional health care providers, and a substantial open-source medicine movement may the real competition professional providers and researchers need to reduce costs.

  9. Joel says:

    One of the most important things that an open source movement could offer is basic science.

    The sheer number of bodies needed to judge treatments seems to be the reason medicine is focused on highly-profitable palliative treatments.

    Done right, mountains of epidemiology data could be gathered, too.

    Also, I bet such a movement could allow for an unprecedentedly good longitudinal study. It would be limited to people who fundamentally don’t care about their privacy, but that isn’t as narrow a limitation as ivy-league males or female special ed students…

    1. Peter Semmelhack says:

      Joel – I had not thought of the possibility of open source + clinical trials but you’re right. It could be a great way to get real, high quality data.

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