[TommyI]

AJ you are right to raise this important question. And I liked your response about the can of worms too!
Sometimes I am envious of the depth of advocacy in the US. Right now I am not.
The point about "the use" of the database is a can of worms. So you will never make a decision by consensus. You must surely create a committee here with a Chair. They should have responsibility for how the data is used. Of course, there could also be regional committees which supply the the central database which have their own set of rules. If you create a network of data feeding ever upwards you have Christmas tree effect which should cater for everyone's needs.
This is not really my place to say it, but my perception of this is that you need to choose or even elect a committee asap before we lose impetus.
Carey seems enthusiastic about this - could she not Chair and work out a democratic way of choosing a committee. Someone needs to grab this and take charge.
Sorry to interfere.
Tom
PS I think this whole idea does link in with WPC very nicely. Let's get it up and running first.

[indigogo]

Originally Posted by TommyI

AJ you are right to raise this important question. And I liked your response about the can of worms too!
Sometimes I am envious of the depth of advocacy in the US. Right now I am not.
The point about "the use" of the database is a can of worms. So you will never make a decision by consensus. You must surely create a committee here with a Chair. They should have responsibility for how the data is used. Of course, there could also be regional committees which supply the the central database which have their own set of rules. If you create a network of data feeding ever upwards you have Christmas tree effect which should cater for everyone's needs.
This is not really my place to say it, but my perception of this is that you need to choose or even elect a committee asap before we lose impetus.
Carey seems enthusiastic about this - could she not Chair and work out a democratic way of choosing a committee. Someone needs to grab this and take charge.
Sorry to interfere.
Tom
PS I think this whole idea does link in with WPC very nicely. Let's get it up and running first.

Tom - I'm confused - is what we are proposing as committees different than your regional committees? At what point and by whom do you see tackling the "can of worms" in your vision?

Any and all advice is welcome! You absolutely are not interferring!

[TommyI]

Apologies for the previous post - I woke up feeling like one of the seven dwarves - and it wasn't the one called Happy. I was just a bit frustrated and rather took control. Ignore me.

[TommyI]

Carey my last post and yours crossed.
All I was saying about the regional committees is that anyone can start off a database and these could feed into the main. That way if anyone feels they want to use data in a specific way for more local purposes, they could set up their own regional database which could feed into the main one. That way you have regional "ownership" without compromising the integrity of the main database. We could have a section on the website entitled "start your own database."
This is using the power of the internet in a simple but highly effective way.
Any good?

[paula_w]

Just catching up. Grumpy, no problem - this may look like disagreement and confusion, that's because we are humans tackling the organization of something new. I think these issues are usually taken on and debated by all privately - not in the open - and here's what it looks like.

There are only a few people expressing opinions and questions are being asked that are legitimate, but not necessarily having answers.

Here's another thought. We may need to split this up into two databases. I think there are unspoken opinions on this forum about wanting to participate in the e-patient concept, to include more information in a database and share it, somewhat like PLM but our own. They may not be speaking up, because of intimidation or have just given up on this long thread. We are calling on researchers to data share, but developing our own database not to share. As John said tho, it's more possible to do things like that now and two databases may not be that unrealistic. As for an email database, it should be able to get going fairly quickly.

I think we need to meet with Doc John and see what his ideas are. These things take patience, and we must all remember that this is a forum of people who are very ill. We don't know our potential - this is self discovery. i am going to start a new thread.

I agree with Jaye that we should be equipping ourselves to work online, not travel. There will come a day when travel becomes too difficult.

just saw Tom's post - it's not too different a concept from my post is it?

paula

[Splanton]

From their WWW page, it looks like this is some sort of $$$ contractual service offered via employers, etc, rather than accessed by non-members? They claim to have a database of MDs with expereince, etc...:
http://www.bestdoctors.com/bd/index.php

Stan

[jeanb]

OK it's morning in Arizona, and I've been ruminating... So take or leave my thoughts -

I'd say there is consensus that the people posting on this board want to do something. And consensus that one or more databases is also what the group wants to do.


Is there consensus on what database(s) this group wants to create?
Is there consensus about a purpose for each database?

Then next:
Decide (come to consensus) who will lead each database effort?
Decide (come to consensus) how the project(s) will be accomplished?
--Decide (come to consensus) who will design the database(s) ?
--Decide (come to consensus) who will administer the database(s) ?
--Decide (come to consensus) how the database(s) will be paid for ?

Paula,your suggestion to contact DocJohn is a good one. DocJohn, What are you offering to do?

Originally Posted by TommyI

...
All I was saying about the regional committees is that anyone can start off a database and these could feed into the main. That way if anyone feels they want to use data in a specific way for more local purposes, they could set up their own regional database which could feed into the main one. That way you have regional "ownership" without compromising the integrity of the main database. We could have a section on the website entitled "start your own database."
This is using the power of the internet in a simple but highly effective way.
Any good?

[paula_w]

I thought we might get more responses through a poll and was waiting for carey to respond. My feeling is that there is a need for more than one database and that the email database could get up and running quickly. So hopefully a poll with these questions that will take anonymous voting will be up today, including how to handle the email database that will likely get going right away. People can work on whichever they like or both.

I have a PM in to DocJohn. That was one of the reasons it was suggested that we break up the thread, that DocJohn might not have time to keep up with one all together.

paula

[indigogo]

Jean said:
"I'd say there is consensus that the people posting on this board want to do something. And consensus that one or more databases is also what the group wants to do"

Paula said:
"My feeling is that there is a need for more than one database and that the email database could get up and running quickly. So hopefully a poll with these questions that will take anonymous voting will be up today, including how to handle the email database that will likely get going right away. People can work on whichever they like or both."

Sounds like consensus for at least two kinds of data bases. One, an email list for advocacy. Two, a more detailed collection of medical data.

Then there is the third concept to be discussed: What is the platform that will host the databases? This relates to Tom's comment:

"All I was saying about the regional committees is that anyone can start off a database and these could feed into the main. That way if anyone feels they want to use data in a specific way for more local purposes, they could set up their own regional database which could feed into the main one. That way you have regional "ownership" without compromising the integrity of the main database. We could have a section on the website entitled "start your own database."
This is using the power of the internet in a simple but highly effective way.
Any good?"

I'm kind of a big picture person. My bias is showing in my preference for the simplest database; I don't want to go near anything more complicated. But obviously there is a need for something more complicated, and the goal is to be as flexible as possible; I really like Tom's working concept of the many feeding into the one. It looks like a river system flowing to the sea.

Maybe we need two or three (?) consecutive efforts to keep things going: one, people who want to work on the platform and overall concept (my personal choice) and those who want to work on database details. This last can be either one or two groups; email advocacy and/or more detailed statistical information. And anyone out there who wants to contribute to one or more of these efforts, please feel free to join in!

LATER ADDITION: My overall concept: Design a website platform where people can sign up to be members; this creates the email database. The website can run surveys and have news, plus link to forums like this where thoughtful discussion on topics of interest to patients is occurring. Once a member of the group, you will have the option of becoming more involved in other data gathering around symptoms, treatment, or other interests the group comes up with on a regional or global basis.

[chasmo]

over-engineering this concept!
Lets go with it,not talk it to death!!
I agree with Carey being the chairperson of this effort.
We can fine-tune it as we go.
Charlie