[indigogo]

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”

[paula_w]

1) Do we need a global database of patients? Yes

2) What is the database for nd what information do we need from those registering? agree with Tom, assuming we are going to use it as an ongoing source of gathering more information as needed.

3) Who runs it?Regions are good; I think neurotalk should be one of the locations - it's neutral, professional, and will likely be around a long time. Adding that it also constantly draws more patients in.

4) How do we promote it? the video- in addition to other suggestions

5) Should there be a video? yes

6) What should the video be about and who should organise it? volunteers who are intersted -with you tube - you can easily make it global. The video can be embedded in any site. Worth the effort any money spent, but I think we will get volunteers. Adding answer to first question - the video should be about our needs - and show how this database might help those needs to be met.

7) What rules should be applied to the use of the database? i think it should be considered that some data be shared if it's for a good, pre-screened cause, but not sold.

8) Do we use the database for commercial purposes? no

9) How are future decisions about the database made?To be determined

10) What do we call the database?
Electronic email registry

paula

[indigogo]

Tom - I've been thinking about the PD World Congress in Glasgow in 2010. Do you think there is a possibility of having a patient panel on the value of the internet in care, treatment, cure, and quality of life? Or other patient panels on other topics of interest?

Perhaps we need to survey the community . . . wouldn't it be great if we had a way to do that? Oh yeah! That's what we're attempting to accomplish here - a mechanism to capture the voice of the patient.

Let's make it happen!

[Todd]

Trying to recover from the YOPN in Atlanta and especially the travel, which has made my mind foggy and my body achy.

And trying desperately to keep up with this thread I started and the multitude of directions it has taken.

Despite all the great ideas generated by my post, my personal opinion is based on my original post. How do we get the PD organizations to at least come together enough to create a national, if not global, joint awareness campaign?

How can we, as people with PD, put the pressure on them to realize how important this is to everyone involved?

How can we use the enormous power we have in a positive and productive manner to enact much needed change, first through a joint awareness campaign?

In my mind, this would be the beginning of many great things for our community. But it will go where it needs to go...

Fight the good fight.

[michael7733]

Pick a day

Set it aside as The Day of Accountabilty

On that day, all PWP and their care providers everywhere should make a valliant effort to be in public view, whether on or off.

Each PWP should have with him/her a sign reading, I have Parkinson's Disease...What do you have? What are we going to do about it?

Each should also have a card listing the organizations worth supporting.

advertise it...get media attention

[indigogo]

Originally Posted by Todd

Trying to recover from the YOPN in Atlanta and especially the travel, which has made my mind foggy and my body achy.

And trying desperately to keep up with this thread I started and the multitude of directions it has taken.

Despite all the great ideas generated by my post, my personal opinion is based on my original post. How do we get the PD organizations to at least come together enough to create a national, if not global, joint awareness campaign?

How can we, as people with PD, put the pressure on them to realize how important this is to everyone involved?

How can we use the enormous power we have in a positive and productive manner to enact much needed change, first through a joint awareness campaign?

In my mind, this would be the beginning of many great things for our community. But it will go where it needs to go...

Fight the good fight.

Todd - welcome back! It would be great to hear about the conference.

Sorry we've gone astray from the thrust of your original post. In some ways we are talking about 2 distinct topics, org unification vs. the patient voice.

I think the reason the patient voice topic took off is because there is very little we can do as patients to unite the orgs in any meaningful way unless we present a united front ourselves. The "database" idea is an attempt to organize in order to do just that.

I think we should survey the patient/caregiver community on the topic of organization unification - like the Harris survey a couple of years ago that produced the "surprise" news that patients were more troubled by the non motor symptoms of PD than by the motor symptoms. The results of that survey had tremendous impact. This new effort at patient unification will provide a platform for those kinds of activities. If we could find a way to do it sooner, I'd be up for that!

[jeanb]

my answers in purple

1) Do we need a global database of patients?

YES agree

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

We only really require - name, age, sex, year of diagnosis, region and country and email address. agree

3) Who runs it?

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

We should consider writing grant(s) to pay professionals to set it up and host it

4) How do we promote it?

Word of mouth and a central website where people can register. The front page would direct people to one of the two regions which would link to two totally separate pages.

yes - plus (in the US) contact state & local PD groups, post on blogs, message boards etc

5) Should there be a video?

No. I can’t see the point in it really. And it would be expensive.

Why not - if patients & volunteers want to do it themselves

6) What should the video be about and who should organise it?

N/A. What we need is hard data and a clear message as to why it is important. Then we gain momentum through word of mouth and exposure

i'd assume it would be for some aspect of awareness, but it would be up to whoever wants to work on it

7) What rules should be applied to the use of the database?

I think best to leave that decision until a bit later

details later, but ensure that when people sign up, they know why, and how their data will be used

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. agree

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. agree

10) What do we call the database

PD-HOPE for all

[aj04]

Maybe this is obvious or maybe I missed it in reading all of these wonderful posts, but will the database be available to everyone who participates? To everyone/anyone?

[indigogo]

AJ - how do you envision it working?

[indigogo]

AJ's question about data availability is embedded in Tommy1's question #7

7) What rules should be applied to the use of the database?

I am wondering if the word "database" is somewhat misleading? Sounds like the purpose of the effort is to collect data about people rather than build a community for action. The data collection that has been proposed is less than is required to sign up to receive information from or to become members of other internet sites.

I think a better word is "membership." As these discussions go forward, another question to be asked along with Tom's "what rules should be applied for use" is "what do people get for their membership?"

One example of a public membership list is right here on NeuroTalk under "Members List" above. When you click on any of our names, each individual can control the amount of information they want to reveal publicly.

These are some initial thoughts!