I just remembered another example. I have been living with Type 1 diabetes since I was 7, and I remember some 10 years ago reading about a diabetic who had hacked together their own technology as an “artificial pancreas” combining an insulin pump connected to devices the measure blood sugar levels.
The story was that major companies that profit from the money made in diabetes care systems kept pressure on not to allow more devices to come on the market or want to control the prices (that’s just my memory" but organize under the hashtag "WeAreNotWaiting as in “We are not waiting for government or commercial entities to create the health care we need”.
See for example
There is the Nightscout Foundation that supports and organizes efforts by people building their a suite of open source medical devices for diabetes care. NightScout is just one:
Nightscout (also known as CGM in the Cloud) is an open-source cloud application used by people with diabetes and parents of kids with diabetes to visualize, store and share the data from their Continuous Glucose Monitoring sensors in real-time. Once setup, Nightscout acts as a central repository of blood glucose and insulin dosing/treatment data for a single person, allowing you to view the CGM graph and treatment data anywhere using just a web browser connected to the internet.
There are several parts to this system. You need somewhere online to store, process and visualize this data (a Nightscout Site), something to upload CGM data to your Nightscout (an Uploader), and then optionally you can use other devices to access or view this data (one - or more - Follower).
Also related is The Open Artificial Pancreas System project (#OpenAPS)
The Open Artificial Pancreas System project (#OpenAPS) is an open and transparent effort to make safe and effective basic Artificial Pancreas System (APS) technology widely available to more quickly improve and save as many lives as possible and reduce the burden of Type 1 diabetes.
OpenAPS means basic overnight closed loop APS technology is more widely available to anyone with compatible medical devices who is willing to build their own system.
We believe that we can make safe and effective APS technology available more quickly, to more people, rather than just waiting for current APS efforts to complete clinical trials and be FDA-approved and commercialized through traditional processes. And in the process, we believe we can engage the untapped potential of dozens or possibly hundreds of patient innovators and independent researchers and also make APS technology available to hundreds or thousands of people willing to participate as subjects in clinical trials.
These are all efforts using the ideas of open source / open access / open data but also are able to organize and coordinate efforts via the open internet.