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

[Mary-Anne Wolf]

Here
http://file.scirp.org/pdf/OJOG_2015012313592885.pdf
is an example of doctors reporting how they needed to make adjustments to a 
pacemaker when the patient was pregnant.
I remember hearing a talk by someone who had a pacemaker, got pregnant, and 
could not have the settings changed. She said, at the time the overlap of 
people with pacemakers and those who got pregnant was too small for the vendor 
to have included that ability.

While I can understand why it would be possible to do harm by adjusting the 
settings in the wrong way, we have an example here of a medical device where a 
level of openness was essential to the well being of the patient, so clearly 
that even the doctors knew.

A difficulty of restricting the ability to change settings to officially 
trained staff, as was done here, is that the priorities and perspective of the 
patient may not match the priorities and domain expertise of those who treat 
them.

Here is an example of a doctor discussing that difference.
http://starlafitchmd.com/can-being-a-patient-make-us-better-doctors/
"allow me to apologize to my patients. I had no idea. None."

With wheelchairs, is it more important to adjust the center of gravity in a 
manual chair so as to make it 
less likely that the chair falls over backwards when climbing a steep ramp?  Or 
is it more important to adjust so as to minimize the patient's fatigue in 
getting the chair to move?  Patients may differ in what they prefer, or the 
same person may change their mind over time.

Is it more important to introduce a delay in response to the joy stick 
controlling a power wheelchair, so that a 98 year old nearly blind person with 
shaking hands will not move the chair by mistake?  Or is it more important that 
a healthier 54 year old person can avoid running over the small child who is 
moving unpredictably in a supermarket?  The pacemaker vendors are ahead of 
wheelchair vendors in understanding the need to adjust and customize.

Mary-Anne