[pegleg]

Originally Posted by Carolyn

PLM is an odd place, I will grant that.

I describe NT as the intellectual board. The place where the advocates of the PD community come. PLM is the social board.

While I see topics flourish in NT, as this thread has done, in PLM this topic very quickly becomes dead in the water. I have attempted to foster advocacy, etc., but it not going to happen in PLM. There is little interest in PAN, for example.

I do agree with Stan that PLM does serve a purpose. Many there have found PLM as their first stop in meeting other PWPs. They come there and find a voice and a place to share and ask.

I have met Paul Wicks, Research Scientist and primary spokes person for PLM. He is a committed scientist.

I have suggested NT to a few by Private Message, but none have taken the suggestion to come in here to NT.

A CORRECTION: The post the Stan quote Pegleg about above was written by me, Carolyn. We are sharing a room here at YOPN and I thought I was logged in...too tired to notice that is was Peggy that was logged in.

[jeanb]

You can use SKYPE through your computer and have free conference calls.

[Splanton]

While rummaging, I found an article I thought is interesting--it deals with the locus of leadership: internal to the group, or external:

http://www.leadersdirect.net/article...der/Page1.html

Stan

[lou_lou]

after they -refer to paula's post -" Monkeys in the middle"

They take the tape that jaye found and perry c.
gave to 60 minutes to court -

we can leave this up to Doc John, as he is trustworthy
a good mman
-ie: he has a close family member with PD...

because of all involved in what he can do online -perhaps -certain Parkies
could sit as E-Patient Board members, for example Perry C.

that is my 4 dollar idea...

[paula_w]

This thread started with a call for pulling it together to do a you tube video. grant r is in the business and offered to do it. I'm really putting myself out on a limb here with the thoughts that are going through my head about this and I can take honest opinions from you all.

I don't picture a sad video with people looking glum, but rather a music video with satire - I want it to be GOOD, VERY GOOD. Jaye and I were brainstorming and came up with some funny stuff. I am not dragging my feet on this one, I say we start yesterday. And we did! lol PM me if you would like to work on this.

paula

[SherylJ]

[QUOTE=Jaye;341496] I hope I'm not seeing a rush to get down to too many details before we're ready, although it does seem like time to get on with it. When the group in Atlanta returns seems like a good time to me. I think we need to acclaim some leaders, to avoid duplication of effort and working at cross-purposes as much as possible.

(Quaker expression)
Quakers make their business decisions on the basis of consensus. A Meeting for Business goes on until everyone agrees on any action to be taken. This can take forever. But maybe some of you more astute (or trained in the law) folks can help figure out how we could approach that model, while still having someone(s) in harness at the front of the team, or sitting at the top of some heap of responsibility.

It seemed to me that Jaye's suggestions for conducting this patient advocacy group, and especially for developing a database, were adopted by the majority of those who posted responses.

Paula wrote: "The assumption that anyone will handle anything is premature and administration of anything must be a group decision. We are in the beginning stages, and have agreed to not go with anyone's preconceived agendas. A few people posting on a forum cannot assume anything or make decisions for a group that isn't formed or a message that is not formed."

Imagine my surprise to read Paula's morning post that she and Jaye have begun "brainstorming" on "a music video with satire" for posting on U TUBE; and her posts about using the database to advocate re electronic medical records... all this before we have reached consensus on what message the group wants to convey.- I can't help but feel there are different rules for different people.

I don't mean for my comments to be divisive. I'm voicing how I feel because if I don't these feelings will fester and not allow me to be as productive as I could be.


To quote Carey "I don't think it is possible to go forward unless everyone is able to start fresh with no personal agendas. Believe me, I've been getting emails and calls from all quarters already. Time to work together, folks."
__________________

Respectfully,
sheryl

[paula_w]

OK let's get the air cleared here lest we fail before we start. This is what we are trying to prevent, so lay down the anger for starters.

This new patient group, needs to be just that - new. But you and Jean have been working all along on the tulip, which is a great cause. I think they could mesh very well, but that's different from Jean assuming she would manage the database, starting a forum on your site, and making it private membership by invite only.

When you asked what action to take first, I suggested the video, but really it was Todd who was asking why can't we make a video. Since then, I have posted on your forum, clearly stating ideas for a video and said let's get on this right away. grant is already working on his end.

Nothing would be done on this video without consensus, I always ask others opinions...always. Nothing is etched in stone - i 'm just pitching an idea. So far this is the only response recieved from you about a video. I'm calling for people to work on it. It's not in anyone's name. I fail to see the problem.

What the real problem is...we don't always agree. ANd that is what i see needing to be ironed out.

John offered to host us, and i think you and jean had different ideas about your site being the host. Well regardless of who may end up being the host your database is a possibility. But not by grabbing it. i asked john how to speak privately, like in a private forum, so that we could discuss what he can do for us. I never intended this group to be by invitation only so people can't "snoop". immediately, it was pointed out that there already was a forum made and which did i want?

finally, this morning, I followed john's directions to the social groups and see a forum already set up with the tulip and named the same as your site. No one was consulted. now people have to be invited to a forum named after your site to do this. So who is bringing and agenda?

In my opinion you two do great work, and i"m glad to have your energy. But you can't grab it, it has to come together in harmony. I feel that we are doing something historic in the field of medicine by actually creating great talented advocacy out of such diversity and illness. I think we need to start fresh with a name and the tulip and stamp should be included in whatever manner the group wants. Your database may be just right.

I think the video should be a separate project and i'm laying out some ideas for people to accept or reject. We don't want the video to be about a database or criticizing the orgs. But we do need a video that expresses all of our issues, possibilities are endless through satire IMHO.

We will have leadership roles and yes you two are just do it people. But advanced people will talk till they are blue and not follow up. That's pd - if you 'd rather call it lack of personal responsibility - you may regret your view of our cognitive losses someday.

ok give it to me back and lets get on with it.

paula

[quote=SherylJ;342720]

Originally Posted by Jaye

I hope I'm not seeing a rush to get down to too many details before we're ready, although it does seem like time to get on with it. When the group in Atlanta returns seems like a good time to me. I think we need to acclaim some leaders, to avoid duplication of effort and working at cross-purposes as much as possible.

Originally Posted by Jaye

(Quaker expression)
Quakers make their business decisions on the basis of consensus. A Meeting for Business goes on until everyone agrees on any action to be taken. This can take forever. But maybe some of you more astute (or trained in the law) folks can help figure out how we could approach that model, while still having someone(s) in harness at the front of the team, or sitting at the top of some heap of responsibility.

It seemed to me that Jaye's suggestions for conducting this patient advocacy group, and especially for developing a database, were adopted by the majority of those who posted responses.

Paula wrote: "The assumption that anyone will handle anything is premature and administration of anything must be a group decision. We are in the beginning stages, and have agreed to not go with anyone's preconceived agendas. A few people posting on a forum cannot assume anything or make decisions for a group that isn't formed or a message that is not formed."

Imagine my surprise to read Paula's morning post that she and Jaye have begun "brainstorming" on "a music video with satire" for posting on U TUBE; and her posts about using the database to advocate re electronic medical records... all this before we have reached consensus on what message the group wants to convey.- I can't help but feel there are different rules for different people.

I don't mean for my comments to be divisive. I'm voicing how I feel because if I don't these feelings will fester and not allow me to be as productive as I could be.


To quote Carey "I don't think it is possible to go forward unless everyone is able to start fresh with no personal agendas. Believe me, I've been getting emails and calls from all quarters already. Time to work together, folks."
__________________

Respectfully,
sheryl

[indigogo]

I think it would be great to keep the discussion going right here, publicly, with no hidden agendas. We will have disagreements, but that is a natural part of the process and can be tolerated.

Paula - the reason I haven't engaged in discussing the video is because we don't have a focus or goal yet if, indeed, we want to distill all of our distress into some sort of action.

What are we attempting to do?

Unify the orgs?
Develop a patient advocacy database? For what purpose?

It might take a bit longer than "just do it," but to be effective, we really need this to be a consensus building process; it has to be owned by all of us.

here's some info about group consensus:
https://www.msu.edu/~corcora5/org/consensus.html

Some excerpts:

"Consensus is a decision making process that works creatively to include all persons making the decision. It is the most powerful decision process as all members agree to the final decision. This is truly radical democracy as all participants have a direct voice and veto power.

Consensus can work with groups as small as 5, groups of 300, or even over 500,000 people. Within a small group consensus tends to be more simple if all the group participants are kept abreast of each other's activities and all the factors of the decision. Within groups of 300 or so, consensus takes fractally differents shapes: the group might have a single faciliator, and the 300 members may be arranged into mini-groups of 5 using consensus and with one spokesperson who speaks in the larger group. . . .

In short consensus takes into account and validates each participant. Everyone gets the opportunity to voice their opinion, or block a proposal if they feel strongly enough about a decision. . . . .

What Exactly Is Consensus?
Consensus is a decision making process which equalizes power over a group of people. Instead of simply voting for an item, and having the majority of the group get their way, the group has to sit down and get a solution to a problem that EVERYONE is ok with. People take different ideas and we see how we feel about them. The solution that the group thinks is the most positive gets chosen, unless a member of the group finds the solution totally unacceptable. Consensus is based o comporomise, and the ability to find common ground.

Why Would We Want to Use Consensus?
Consensus is a system that promotes participation because each person has the power to make changes in the system, and to prevent changes that they find unacceptable. People are often inactive because they feel that they have no power in the system and their voice won't be listened to. (Isn't that why so few people vote in most industrial democracies?). Imagine if corporations has to have consensus from a community to build a plastic factory near them, or an incinerator. Shouldn't this be what happens regularly?

Since consensus would give everyone power to have their voice be heard, it would force people to listen to each other, and answer their concerns instead of moving past them.

But's What's Wrong with a Majority Rule System?
The majority rule system is set up to have a winner and a loser. This promotes conflict, and lends itself to steamrolling an idea over a minority that dissents with the majority opintion. People in a majority rule system don't need to listen to the dissenting minority, or take their opinion seriously because they can simply outvote them. Majority rule systems say that the majority is infallible and they have nothing to learn from the minority. There is no moral system at work with a majority rule system, and there is nothing to say that the majority of people will come up with a morally acceptable system. (I mean, didn't the majority of colonial Americans support the ``right'' to hold slaves?).

But We Wouldn't Be Able to Accomplish Anything!
Well, this isn't exactly true. Using consensus based decisions the Iroquis nation managed their lands and people very effectively. More recently, the Zapatista network in southern Mexico has been using consensus decision making with everyone 16 and over participating. Any proposal by the Mexican Gov't has been endlessly discussed by each small village in the Zapatista network until everyone agrees. The decision to wage war, and then continue after the Mexican Gov't made some initial concessions was done consensually with a 98.2% approval.

Consensus has also been used at 300 person anti-nuclear protests, and during all sorts of activities. It is an all-inclusive form of decision making that everyone can walk away from comfortable and satisfied with the outcome.

Be Honest, What Are the Bad Things About Consensus?
Since it is a lengthier process to hash out ideas until all objections are resolved, your group meetings might be a bit longer and some proposals might regularly take more than a week to decide. Also, since some proposals may be just shot down without hope of compromise, consensus sometimes favors the status quo."

[Splanton]

A study of multiple nations' approaches to patient advocacy; the examples are all dealing with "institutionalized" DISABLED patients, unfortunately, but the questions/categories might be worth a glance, particularly if you're interested in foreign models for advocacy. Nations covered and authors are below:

Australia Sandra Seymour and Dr Dimity Peter
Canada Bruce Uditsky
Scotland Goodbody Economic Consultants
New Zealand Patricia O’Brien
England and Wales Goodbody Economic Consultants
Sweden Goodbody Economic Consultants
USA Michael J. Kendrick

http://citizen.ie/publications/socia...ume2Report.doc


Stan

[Jaye]

Thank you, Carey, this is what I was trying to point to with the reference to Quakers, but you have found some great information that we all can use to learn more about it.

Thanks to Stan and other who have posted educational links. I have spent all my free time today on "homework."

Jaye