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


From: christopher Lucy
Subject: Re: [libreplanet-discuss] [fsf-community-team] Golden Rule
Date: Wed, 17 Aug 2016 09:31:45 -0400


Does anyone know where  medicare and BUMMERCARE  STAND ON THESE ISSUES IF TAX DOLLARS ARE GOING INTO  R&D OR SUPPLY TO END USERS(PATIENTS).CL
On Tuesday, August 16, 2016, Mary-Anne Wolf <mgwmgw@comcast.net> wrote:
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


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