Re: [libreplanet-discuss] [fsf-community-team] Golden Rule

[arthur_torrey]

There is a very mixed bag situation on medical device hacking, in that yes, it 
is definitely possible to cause potentially life threatening situations if one 
makes modifications the wrong way...  On the flip side, is it any better if 
that mistake is because the proprietary manufacturer doesn't allow fixes that 
improve the patient's quality of life?  Why should the patient need to BEG for 
problems to be solved, or only be allowed to do things that the provider thinks 
they should be ALLOWED to do, as opposed to being allowed to at least TRY to do 
more?

I think that what should be done at a minimum is to allow any programming 
parameters to be changed, even if the program itself is more thoroughly locked 
down, or more difficult to modify, while providing a good and accessible set of 
information and warnings on what they do...  I am far from thrilled by the 
multiple 'Are you SURE?' checkboxes that some proprietary O/S's put you 
through, but could see some level of that on particularly dangerous 
parameters....

In terms of the medical device area, I think that it would be VERY good to do 
something on the line of an open source hardware group for medical devices.  I 
have had a long time interest in trying to make better chairs but have been 
worried about how to handle the regulatory and liability concerns.  Among other 
things, a collected knowledge base of how to do things without getting into 
problems with the government bodies dedicated to blocking progress...

I don't know if it is related to the gait training program you have been 
working on, but I know that there at least used to be an effort to create an 
open hardware version of the electro-stimulation exercise bikes (FES) a few 
years ago.  I found that my injury is such that I don't respond to 
electro-stim, so I am no longer following the project and don't know it's 
current status...  Given that the best commercial bike is over US$15K, runs on 
MS Windows, and requires an internet connection to get PERMISSION for you to 
ride it according to parameters that THEY set, seems like there would be a 
market for an alternative....

Also I like to point folks at WheelChairDriver.com, as a site where people are 
doing serious hacking on power chairs, including all the electronics, with some 
impressive results...  

ART
=========== ORIGINAL MESSAGE ==============
Message: 1
Date: Tue, 16 Aug 2016 15:11:03 -0400
From: Aaron E-J <the@otherrealm.org>
To: libreplanet-discuss@libreplanet.org
Subject: Re: [libreplanet-discuss] [fsf-community-team] Golden Rule

        

Angle for Libre Software Advocacy
Message-ID: <aef0ef51-1917-7b6a-d4dc-39e14e07dca3@otherrealm.org>
Content-Type: text/plain; charset="utf-8"

If an open source device is modified by the end consumer and this
consumer does not know what they are doing, in the medical field this
can have life threatening consequences.  People who do not understand
what it means for something to be open source could take a press release
about such a scenario and run with it; saying that this is a reason for
keeping code a secret.  Such a program needs for the devices themselves
to be very secure and un-hackable, but for the method by which the
devices are made and the source code to be open.  There is tremendous
potential for a bridge to be formed between the users of the
technologies and their development.

I was working on a project to develop an open source electrical muscle
stimulation device with the initial use going towards the development of
a gait retraining system.  This is currently on hold, but I would be
interested in working with other people in starting an open source
medical device organization geared towards developing new devices and
advocating for a more libre healthcare system.

You can read more details about the device I was developing on my
website: otherrealm.org

Let me know if you are interested in such an organization or if you know
of existing organizations with this focus.


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Arthur Torrey - <arthur_torrey@comcast.net>
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