Patients need open access to all the elements of technology involved in therapy in order to ensure safety.
One of many concrete examples involves generating safe insulin doses. The vendor hard coded the active lifetime of insulin into all models earlier than the 515 series. This guarantees that patients receive the wrong amount of insulin. The only feasible way of getting safer doses of insulin is to buy a pump in the 515 series or newer. Users who do choose to buy a new pump, can customize this variable, but the variable remains static until it's changed again. In reality, your sensitivity to insulin varies, and the amount of insulin one should receive also varies dramatically throughout the day depending on what life throws your way.
However, the pump has an administrative protocol that allows software to automatically audit logs, reconfigure settings, create and administer dosing schedules. If users had access to this protocol we could use it to work around bugs like hard coding the lifetime of active insulin in order to better fine tune our doses. We can also use the protocol to audit the logs, allowing us to independently verify that pump therapy is safe.
There are many other examples where having direct access to all the technology involved in therapy provides an epistemic certainty integral to basic science. As patients and users of medical technology, we want to believe that it is safe. The only way to do this is to independently compare the behavior of their technology, with our peers and to study it for bugs and safety. In the process of doing this we discovered that the same commands used to audit the native therapeutic logs can also be used to reconfigure the device, and administer insulin in ways that can work around bugs, accidental or otherwise, that are currently ensuring unsafe dosing for pump users.
The manufacturer is content to give me inaccurate dosings, but refuses to share information about the protocol needed to quickly and safely and independently manage my therapy. As patients we need access to all the technology in our therapy so that we can have epistemic certainty that our therapy is safe.
We set out to use the protocol in order to audit logs more effectively and found out it's possible to generate safer doses and work around bugs in vendor therapeutic software. The protocol is not available for our use, but we need it in order to secure safe therapy. Without having investigated the technology involved in our therapy, we cannot believe it is safe, and we would not have learned about it's true capabilities.
Please help the hackers fix dangerous vendor bugs by demanding open access to the protocol from Medtronic.
Or help us hack on insulaudit, which aims to be like curl for medical devices. We can talk to the pump, but we are having trouble decoding the historical data.