Open Artificial Pancreas System and the promise and limits of user innovation


#1

An artificial pancreas uses medical equipment or (theoretically) bioengineering or gene therapy “to help people with diabetes automatically control their blood glucose level by providing the substitute endocrine functionality of a healthy pancreas.”

Discussion of “FDA approves Medtronic’s ‘artificial pancreas’ for diabetes” includes:

Just to give a little more context. This is a start but it’s by no means the finish line. Additionally, this is just one company’s closed source system that is kind of the “Tesla AutoPilot” for diabetes. It will TRY to keep you in the lines but if there is a real turn or a stop light, you absolutely need to take control.

Go google for “OpenAPS” and “WeAreNotWaiting” for existing open source systems that do more than this Medtronic system does…they are available now and there are over 100 people using them 24/7.

Additional reading here: http://www.hanselman.com/blog/ThePromisingStateOfDiabetesTechnologyIn2016.aspx

Source: 25 year Type 1 diabetic who is currently “looping” with an open source “artificial pancreas”

It seems that OpenAPS is a great example of “user innovation” that thrives relatively under the radar (not even mentioned in the English Wikipedia article linked above). See their extensive FAQ on the OpenAPS home page. Designed for safety, uses existing medical devices, MIT licensed reference implementation, users have to set up themselves, regulators consider it non-commercial and thus out of scope for regulation. A vision can be found at the end of their reference design page:

As a result of the principles, design constraints, and overall approach taken in designing and implementing OpenAPS, we believe that OpenAPS and similar designs represent the safest, fastest way to make Artificial Pancreas technology available today to people with type 1 diabetes.

In order to extend this vision to all T1D patients, we would ideally like to:

  • Work with medical device manufacturers willing to interoperate with OpenAPS.
    • We would like device manufacturers to provide interoperable communication protocols to allow full interoperability between all diabetes devices.
  • Work with clinical researchers to design and implement open clinical trials in the open source diabetes community.
  • Work with visionary clinicians who would like to advance the state of the art of type 1 diabetes therapy to design clinically useful reporting, alerting and management tools.

This is great. Presumably many more people with diabetes, especially worldwide, would benefit from its realization. The first point and sub-point are a specific case of what free/open source software people have been struggling with for decades now. Cooperation form device manufacturers is spotty at best. That’s one of the limits of non-commercial user innovation:

  • Requires cooperation and/or benign neglect (whether one or both is required depends on situation) from vendors and/or regulators with interest in commons ranging from little to none to deep antipathy
  • Unlikely to reach all people who could benefit due to lack of commercial availability
  • People who do benefit still might bear cost from lack of commercial availability – DIY requires at least time and concentration from user
  • Unlikely to be held up as a breakthrough – it will still be expected that bioengineering or gene therapy or even just the next generation of devices will be developed in secret and not shared

To be clear, none of these challenges are criticisms of OpenAPS. I’ve not read much beyond the links above but it seems like a wonderful project, deserving only of praise and support. Still, these challenges ought be met, perhaps by others and more generally than the specific case of OpenAPS.

For a long time people, perhaps a small number only, have written that user innovation is not only valuable, but should be considered for support by policymakers so that it can become even more valuable, e.g., Benkler and, just because I recently read their 2003 paper on the Welfare Implications of User Innovation, Henkel and von Hippel. (I’d love pointers to the best recent papers on broad welfare and policy/regulatory implications of user innovation.) I suspect one of the reasons user innovation is still not taken very seriously (and user innovators and their advocates remain in a defensive policy posture) is the “user” part. I’d substitute with “commons”. The vision should not be merely to allow more tinkering with existing products, but to remake the commanding heights of the knowledge economy so that all from individual users to the largest institutions are cooperating towards a good future of freedom, equality, and security.

All of the above challenges could be met eventually by increasing user/market and policy/regulator demand for cooperation/commons/openness. Making projects like OpenAPS more known and esteemed seems like a useful step forward.