[indigogo]

I agree with Carolyn - once you are entrenched and familiar with one site it is difficult to leave. Other forums have been tried; PAN has not been successful in their ventures. It doesn't surprise me that they don't show up here; I've looked there, but haven't participated because I like it here.

My beef with PLM is that they are funded in part by big pharma.

I think the object is to build a critical mass of patient voices that is useful for many purposes. It wouldn't be a new forum; those are already being well used. The goal is to do something different; find a way to harness the power of all of the patients using the internet in a way that doesn't disrupt current patterns of usage, but builds on them and enhances what is already available.

I like the concept behind Paula's proposal; researchers could contact us as a source for patients to recruit for studies; we could take patient surveys to determine unmet needs; we could start threads on already established forums to check the sense of the community on different topics. Like the thread we are using right now - it is a transparent look at an issue that concerns patients. The number of posters is not large, but the page views are enormous; it has sparked a lot of attention. If I was an org, I'd monitor it and try to learn from it. Differences of opinion and discussion are important.

"Database" is too narrow a term. Basically, I like the Foundation concept Rick proposed, but instead of starting from a purely scientific basis determined by researchers, we begin by collecting people who then would be in place to provide data the researchers might be looking for, or respond to surveys, or share stories, or read the latest news - the ultimate patient place.

Maybe the way to start, to drive patients to the site, would be Rick's idea of an initial survey to determine what patients think is important.

Bottom line is that it is patient run.

[DocJohn]

PLM is a positive service and contribution to the world, but like every online community, it's not for everyone. I've spoken to some of the people at PLM, including one of their senior researchers, and they are passionate about what all of that data may one day show or help inform future research. But we're not here to talk about PLM...

I agree that whatever is done here really should be an independent effort. Computing resources are so inexpensive nowadays, anybody can pretty much do anything of this nature with little or no cost.

The group mentioned is actually the late Tom Ferguson's e-Patient Scholars Working Group and we blog over at http://www.e-patients.net/

John

[paula_w]

Originally Posted by DocJohn

PLM is a positive service and contribution to the world, but like every online community, it's not for everyone. I've spoken to some of the people at PLM, including one of their senior researchers, and they are passionate about what all of that data may one day show or help inform future research. But we're not here to talk about PLM...

I agree that whatever is done here really should be an independent effort. Computing resources are so inexpensive nowadays, anybody can pretty much do anything of this nature with little or no cost.

The group mentioned is actually the late Tom Ferguson's e-Patient Scholars Working Group and we blog over at http://www.e-patients.net/

John

Thank you DocJohn - the White Paper exlains it all - outstanding reference for us here. We have all learned bits and pieces, but this puts it all together to describe what we are.

paula

[paula_w]

Are we ready to meet with Doc John? Should we take this to a social group? Have a conference call? By doing it on a forum, we are not limited to certain times that some people cannot make. Any suggestions? This is a consensus group and I'm just trying to keep it going, not lead the actual group. So speak up anyone.

paula

[jeanb]

Meeting sounds like a good idea.

Maybe Paula or Jaye or Carey or someone could create an "on line group" where we all could meet -- and then let us know?

Then all interested parties could go there and attend the meetings.

[paula_w]

DocJohn,

Can you give an opinion about whether or not we should discuss our specific collaborations with you privately or publicly? I want to make it easy for everyone to partcipate. If you feel that some things should be private, would you suggest just having people pm if they are interested in receiving an invitation to join? It seems easier to have a social group right here to discuss our ideas and plans regarding neurotalk.

thanks.
paula

[indigogo]

Originally Posted by DocJohn

I agree that whatever is done here really should be an independent effort. Computing resources are so inexpensive nowadays, anybody can pretty much do anything of this nature with little or no cost.

The group mentioned is actually the late Tom Ferguson's e-Patient Scholars Working Group and we blog over at http://www.e-patients.net/

John

WOW! Thanks for the link to e-patients - what a great resource. Noticed this statistic on the first page: The Pew Internet Project released the latest estimate for the e-patient population: 75% of internet users

Incredible!

[Splanton]

Originally Posted by indigogo

WOW! Thanks for the link to e-patients - what a great resource. Noticed this statistic on the first page: The Pew Internet Project released the latest estimate for the e-patient population: 75% of internet users

Incredible!

It pays to advertise your practice:

http://blogs.wsj.com/health/2008/07/...ertise-online/

Asthma caregivers and their networks:

http://www.redorbit.com/news/health/...ma_caregivers/

Navajos not isolated, any more:

http://news.medill.northwestern.edu/....aspx?id=96741


Just a few samples of stories that merge Pew research and health information access.
Stan

[TommyI]

Dear all

Apologies for the long post but I have put some time into thinking about all this -- with the following results.

My Take

1. It is my solemn belief that it is patients who have the passion and the focus to shore up some of the gaping holes in the therapeutic development process. The problem is there are just not enough of us who are active.

2. Patient organisations have to work within a framework, within the system. They are risk averse, as indeed they should be – after all they are spending other people’s money.

3. Patients on their own are prone to strange emotions: neurosis, sensitivities, and disorganisation. Getting things done is difficult.

4. YET we have a role on our own – otherwise who is going to communicate all the things we need communicated. There are certainly times when only the voice of the patient (without the buffer or censorship of a “patient organisation”) will do. WE are the only ones who CAN say – “this decision affects my health.” That gives us power. If we all say the same thing, then we have a far more important thing than power – influence.

5. The problem is we don’t say the same thing and we defeat ourselves with petty infighting and an inability to agree either by consensus or through leadership. This is not really our fault, we are packed full of various medicines after all. So Catch 22.

6. BUT and here is the crunch, we are bound on this forum by one medicine which is common to us all.

We have all prescribed ourselves with the one medicine which treats every part of us; mind body and spirit.

HOPE

Hope ignites a fire in the soul and rekindles the dying embers of ambition and purpose. When you accept there is the chance no matter how small, that you are not doomed to a life borne out of your own nightmares, then you start to gather information and you start concentrating on what you can do, rather than on what you can’t.

We are right to be hopeful and we have a duty to communicate this hope to others so that they too will engage in the quest for the acceleration of the inevitable downfall of Parkinson’s.

A database of patients worldwide does not have to be complicated. It simply needs a central co-ordinator/administrator and no-one should underestimate the work involved in that.

7. The key to a successful database is as Carey highlights consensus.

So why don’t we ask everyone to answer the following questions and see what materialises.

1) Do we need a global database of patients?
2) What is the database for nd what information do we need from those registering?
3) Who runs it?
4) How do we promote it?
5) Should there be a video?
6) What should the video be about and who should organise it?
7) What rules should be applied to the use of the database?
8) Do we use the database for commercial purposes?
9) How are future decisions about the database made?
10) What do we call the database?

For what its worth here are my views.

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

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

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

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.

5) Should there be a video?

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

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

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

I think best to leave that decision until a bit later

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.

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.

10) What do we call the database

PD-HOPE



I see since I started this note that things are moving on with Doc John which is great news.

Look forwad to comments

[SherylJ]

Tom, your plan is very logical and expresses everything I had hoped this group would do. We set ourselves up for success rather than failure By having a narrow focus, and sticking to our unique strengths that come from being people with Parkinson's. I've bolded my thoughts to add onto yours.
sheryl

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

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

YES[/B]
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. LOL Tom... you seem to be familiar with the U.S. map of the world.

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. I think support groups could be a big help in getting the word out, as well as targeted press releases, and perhaps just one vocal Congressman who can help us from the inside.

5) Should there be a video?

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

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

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

I think best to leave that decision until a bit later. It can be later, but must be before we solicit database info. I could not in clear conscience ask patients to sign a blank check, not knowing who will have access to their info and for what purposes.

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. YES

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.

10) What do we call the database

PD-HOPE THROUGH PATIENT INVOLVEMENT or some other tag line that identifies what sets us apart from similar efforts