thanks you Lindylanka,

your comments and proposed plan of actions are great. Hope I can be there at 1pm (Pacific time) on tuesday. I think first we should focus on what we want to do and what is ethical treatment from a patients point of view. For example, i am unsure where I stand on the issue of control group with placebo treatment, is it ethical to deceive ( a strong word, I agree!) a patient who is hoping for a miracle cure? Is there any other "control " we can come up with? I am questioning the protocols of scientific experimentation, because human life and quality of life is more important than papers, statistics and patents.

thanks
Girija

PS: Do you still want me to be there and give my views ?

Hi all,
I have started this thread in response to part of Paulas Ethics thread
on Neurotalk, in which she invites us to a further meeting this coming
Tuesday, with the hope that we can come out of the meeting with an
action plan.

I would like to suggest that before we come to that meeting maybe we
could consider the following (please slap me down if I am speaking out
of turn!).

1. That we formally constitute ourselves as a group. i.e. give
ourselves a unique name.

2. That we formally identify the areas of activity we will engage in.

3. That we adopt, as a means of introducing the group and its
activity, a mission statement that will encompass the things
identified in 2.

4. That we make a start on drafting a formal invitation to PWP's to
participate in the process that we have begun, either as active
participants in the work of the group, or as people interested in the
patient participation process.


To kick things off, I can I make a suggestion that we call ourselves
the International Parkinson's Disease Patient Participation Project or
IPDPPP for short. It is only a suggestion so ...... Please anyone feel
free to brainstorm this, rip it to shreds, or argue for or against it!

Best wishes to all
Lindy[/QUOTE]