[Splanton]

A current dissertation from Sweden on conflicts among agencies and advocates over patients' organzations; again, the questions asked and organizational data pattern are more interesting, I think than the fates of Swedish diabetics' organizations themselves...192 pp, pdf

http://www.diva-portal.org/diva/getD...__fulltext.pdf

[Perryc]

Paula,

You have landed on the key problem any "new" group must face. which is the same issue that more established patient interest groups such as PPP have faced. It has to do with mutual trust, willingness to collaborate, and work as a team.

I was very careful when I wrote about the experience of the Pipeline project in representing the voice of of the patient, that I did not suggest that the PPP become a vehicle for this aspirations of a patient run advocacy list. I know that some think the Pipeline project is too associated with me and should be more democratic, which I agree with to a large extent. PPP is in fact trying to formalize procedures and bring new people into leadership roles, that will allow me to do more of what I do well (strategic planning) and less of what I dont do well (implementation and ongoing project management.)

I stated my followup goal for the group forming here could be to create patient oriented data for research, patient registries,and other patient empowerment activities. For those who are skeptical about such a goal, I say PLM is being advanced in the highest health policy circles in Washington (such as IOM) as an illustration of the power of the internet to transform medical research and care into a patient centered health system. I think we can do better than PLM is doing. Others are quick to point out that this agenda goes beyond their own expertise. I think it is true partly because sharing information among patients to drive research and enable patient centered health care goes beyond everyone's expertise since it hasnt been done before. The reason that I solicit the energies from the people on this forum is because I admire and respect the talents of the people that I know, and I strongly believe that collectively, if we pull together toward the same goal that we can achieve important substantive progress toward making a real difference for PWP everywhere. Taking on simpler goals such as raising awareness may be easier to accomplish and may show results almost instantaneously, but at the end of the day the problem (our biggest problem is the failure of clinical trials) the problem is still there. My talent is my experience and understanding of all levels medical research and health care, and my ability to apply my knowledge to plan solutions. Many other talents are needed.

To me the value of forming a 'new' patient organization would be the unity we would achieve if we actually pulled it off . This would require a lot of give and take. The truth is, I will likely be able to do my data base project with resources and contacts I already have mostly lined up. To make it work well, trust, good will, endorsement, support, and collaboration of PWP are necessary. I put the data base project on the table as an opportunity for this new organization to have a meaningful substantive agenda beyond building a power base through the wide networks of patient advocates.

As you Paula, I can already see some of the problems that have come up previously that undermine team work. I intend to sit on the sideline for a while to see if this 'new' program comes with a new attitude of teamwork. Meanwhile, if anyone wants input from me just ask

Perry


[QUOTE=paula_w;342734]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

[paula_w]

lucky for you all i thought of more to say. [cough] We need to start over now that Doc John has made this generous offer. i have to abandon capitals sorry.

Instead of accusing each other of having agendas, it's much more correct to say we all have our experience to bring to this effort. We are all different here and anyone can have a say. It takes guts to jump in.

There is a large alternative treatment crowd in here. They have better things to do than read this. They bring alternative treatment to the table.

There are some researchers in here...yes even after the things we say about some in their profession. There's a big trust issue that extends, as we have so outlined in this thread, pretty far and wide.

So it finally hit me, that advocates might be worried that the pipeline project was going to promote its agenda in here. Well no....we aren't any more than we have for the last 7 years...lol i've always shared what i learned and experienced thru pipeline.

But i expect this group to do what pipeline couldn't because we had the org restrictions. This is independent. why spend time trying to change the orgs. we have to find our strength and the path. It will open up.

But i suggest that we don't have such a mission as narrow as analyzing the orgs.

Madelyn, for one, is interested in electronic data sharing. perry's been talking about it for years, but we could have the capability to do it here That means 'attention lab rats'! And lots of other things that don't require you to sacrifice your privacy.

We need to become data collectors for our own use and benefit. Let's not even worry about what to call it....let's form it first.

If you are here as an org, should you be? i'm a pipeliner, and a frustrated one. we need an independent voice and an armed one.

thanks perry for helping me to see that clearly. well that should cause the dust to stir, it was too logical.

paula

[paula_w]

you tube - full disclosure - at the very beginning brainstorming stage. Attempting to see if it is even possible to make it a music video. If so, one idea to bring to the table is making it into fantasy comedy. A hovering helicopter with a human face [like jay jay the jet on the cartoon or tommy the train but an older pwp of course]

the helicopter travels and hovers at various locations to the music where our issues and message would originate and peers in the windows. The copter hovers in many pwp windows and sees.....e.g. compulsive punding of various sorts for one example. It travels on to locations like shopping, where the pwp fumbles and all the people are making impatient gestures but to the beat of the music. So many little funny things-but bittersweet.

Big black helicopter means industry.... we aren't very far. it needs corny music.

paula

[olsen]

[QUOTE=Perryc;343022]

What is "PLM"? And Perry, do you work for/direct/manage an organization related to parkinson's dissease? I am sure I should know the answers to these questions, just did not pay attention before. thanks, madelyn

[Perryc]

What is "PLM"? And Perry, do you work for/direct/manage an organization related to parkinson's dissease? I am sure I should know the answers to these questions, just did not pay attention before. thanks, madelyn

plm-- abbrev for patients like me-- a website with a number of neuro conditions where patients share info network with each other. It has been getting a lot of publicity as an important innovation in social networking.

I am a PWP in Washington DC dx 12 years and heavily involved in advocacy mainly with FDA and companies who sponser new PD medical products. I do not work for a PD org although I previosly worked as a consultant to PDF. I was founder of the Parkinson Pipeline project, a grass roots network of advocates, doing what we can do as PWP to facilitate the approval of new PD treatments.(see www.pdpipeline.org)

[Stitcher]

Too long and too much...sorry for the intrusion

[jeanb]

Carolyn, I heartily agree with you. There is a real need for PLM. It does fill a need in the community for many pwp. Do I still think it is "fluffy?" Sure, but everyone needs friendship & comraderie and there is plenty of that and more on PLM. It's a wonderful site for its participants.

[paula_w]

Carolyn,

I was just about to thank you for the information - it was helpful because I have never participated there.

I'm prefacing the following with this, which always applies. I don't know how to form anything anywhere without pitching ideas. So when I type "we should' it really means "how about"....Although I post frequently because I am a compulsive poster and punder, I have no desire to head up this new mission, just would like to be a part of it. That being said:

It's pretty common to stick with the place where you are settled and comfortable on the web. [How many years have we been here?] PLM is a for profit org, is that right?

Without competing with them, we could form our own purpose to collect some data. One thing Vicky Perry [poster here] used to say - and she had a point - was that she didn't think advocates were speaking for her and didn't agree with what orgs and advocates were doing. This could have been true for many people - not just with stem cells, but more than likely many issues. I see getting a handle on patient priorities globally as a real reason to provide and collect information from patients.

paula

[Stitcher]

Paula, if anyone wants to pursue that endeavor I commend them. I say all of this through a vein of tears...thank goodness for right-click spelling correction!!...it is painful to watch oneself deteriorate mentaaly and physically...and most of us can attest too.

As to PLM...I had posted a rather long reply about PLM that I have since deleted. I can see that Paula and Jean did read it before it was deleted.

Personally, I can not even take on another project at any level. I have a hard enough time attending PD functions. Traveling is incredibly hard for me and I have no family member who will travel with me, except for my youngest daughter, who will take the mandatory UNPAID days off, but I won't let her do that. I am too tired with severe fatigue and my mind is extremely foggy anymore. I envy those of us who can still think clearly. Even under normal conditions I can't put a sentence together that makes sense, unless I type it or gather my thoughts in written form first. I am also very very bad at interjecting when I shouldn't...Harley of PAN was the recipient of this yesterday morning...she was too nice about it too...oh how we are tolerated sometimes.

Ronnie Todaro's comment to me two weeks ago still rings in my ears. Peggy, Ken and I were on a conference call with Ronnie Todaro about out YOPN presentation of this past Friday and she said, "Wow Carolyn, you are really with it today." This just reconfirmed for me my inability to think clearly, especially off the cuff. (Long gone are my days of successful brainstorming, as I once was able to do at work.} I had just changed anti-depressants and was in what I thought was a better mental health place, thinking more clearly than I had in years, but sadly it was ONLY an anti-depressant "honeymoon" period that only lasted a very short few days. I am back to my depressive "normal" place now.

I have tried to say it before in this thread...I just don't see the logic in a bunch of sick PWPs, who are progressing in this regenerative disease, undertaking something so huge. Call me a defeatist but, who will continue the project when those who started it can no longer keep going. How many projects have fallen by the wayside in the past 10 years because of PD's insidious progression. I am not condemning the doing, only saying that projects get started and then at some point come to an abrupt halt.

We already have this problem with PPP, and I will get my hands slapped for saying (typing) this too...we are already fearful of PDF for wanting to take up most of our ideals and pursue them with us as "advisers," for lack of a better word, since we are still in discussion with PDF the outcome is unknown.

The Institute is a good example of something that was a vision of PPP that PDF has now undertaken.

If my vision is incorrect, I assume Perry or Paula or someone will correct me.

As to a community video like that post initially by Todd. I vote fot this being done. And if a PD org or foundation can't support the cost...where is George Lucas or another fdilm maker to support that cost. And NO, I am not being funny!!