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Senior Member
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Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
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Senior Member
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
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two cents here
My differences/agreements with Tom in bold
1) Do we need a global database of patients?
YES
2) What is the database for and what information do we need from those registering?
To encourage patient involvement/advocacy
To disseminate information of particular importance
To canvas opinion on issues
To petition
To issue Press Releases
Ditto Tom on the above
We only really require - name, age, sex, year of diagnosis, region and country and email address. – QUESTION: are we limiting registration to patients only or do we include carepartners/family members? Do we add a field: What is your relationship to Parkinson’s?
3) Who runs it?
Tom’s idea: I propose there is a committee of four or five people per region and that there are two regions US and the Rest of the World – This is a good start; would be interested in hearing other ideas as well.
4) How do we promote it?
Email notices to various lists different people have, word of mouth, blogging on other pd and health related websites, using other common internet advertising platforms such as Facebook, MySpace, and YouTube. This is all FREE. If we are creating an internet presence, we need to use the internet in the most current and savvy ways.
5) Should there be a video?
Yes, eventually, once we have a product to promote. YouTube is huge, video production inexpensive, and you never know when something will go “viral.” In fact, we should have many short videos.
6) What should the video be about and who should organise it?
N/A. Too early to discuss.
7) What rules should be applied to the use of the database?
I think best to leave that decision until a bit later – ditto Tom
8) Do we use the database for commercial purposes?
Absolutely not. That would defeat the object. The database should be used by patients for patients only. – ditto Tom
9) How are future decisions about the database made?
The two committees would share everything and would be responsible for making decisions on what is communicated to the database and how. – ditto Tom. I would add that I think that as much discussion as possible among and between committees be done publicly and as transparently as possible.
10) What do we call the database
I think we need something with the word “global” or “international” in it; plus the word “united”
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Carey
“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
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