[keepthefaith1296]

Originally Posted by paula_w

i know you didn't mean to offend charlie. What i would like to say to anybody who read the thread with judgement, that there was pressure from the very beginning to speed it up. We were asked to make decisions without even polling the people who would rather drop dead than jump into this tension - which is very hard on pwp. this is ignored.

i suggested another database from a few comments, intuition based on what i know of the forum - i didn't have a chance to ask the forum yet. We didn't know what john was going to offer for sure.

i agree that carey should be chair - she has earned it.

so by this afternoon, i was a bit punchy...understatement. Now i have hope again - which only causes me to sign off with my signature line

Stay focused.

KTF1296

[reverett123]

paula and I have PM'd a little bit and she has asked that I go public - I suppose to keep things from becoming boring

So-
<In reference to the database>

I think that too much is being made of imagined problems with it. It should be a simple matter to strip the identifiers from it (name, address, etc) and leave things like age, etc.

Do you know Joop Oele ?

He has some experience with this and has a form of it up and going in the Netherlands. I suspect that he has not been on NT lately or you would have heard from him.

If I were king of the forest, I would imitate PLM's approach of making a site that is attractive enough that patients would be willing to take the time to complete surveys and periodic updates and supplementals in return for admission. Not simply PD educational content, news, etc. That attracts people like us but we are the minority. Add entertaining things for those late night hours when we feel all alone. You don't have to create the content, just find it and link to it. Here is an example: www.friv.com - 400 online games. Silly mind wasters. Perfect for the wee hours.

Work Skype into it too. Multi-use. Chat. Collaboration. Video or voice. Little workgroups on subjects like Ron's BBB could use it as could patients who want eye contact.

That takes care of the PWP end. As for the people who want the data, put it into three forms- an anonymous compilation that is posted and free under a Commons copyright where we must be credited. A second in the form of raw data stripped of ID for sale to researchers at a reasonable price to pay the bills. And a third for sale which includes contact info for PWP who select to make themselves availale to discuss their experience with the scientists. This latter group would be the doctors and scientists who have PD and scientific training.

But enough. I think I answered your question at the start and then went capering madly about. Sorry.


<Another option for paying the bills could be custom surveys for researchers of PWP who have indicated a willingness to do so.>

[indigogo]

Rick -

Personally, I think that including information, data, and surveys on White Rat activities would be great - I think the common denominator for inclusion in a "patient voice" project are things that patients are passionate about, but feel are not being heard by or made available to people and orgs who might be able to help (along with galvanizing the patient voice to influence projects that are already being pursued by the orgs).

Have you communicated with PerryC? I'm thinking you guys should find out if there is overlap in your concepts and if collaboration is beneficial. If not, then plan what you want for whatever it is that emerges here. This is the link on "electronic registry in medicine" where Perry and Paula have started to discuss the possibilities http://neurotalk.psychcentral.com/thread51753.html

I hope that whatever we design, it will link to other patient-driven projects such as the one that Perry is trying to get off the ground. I think that Perry's project is so specific, and requires its own funding and staff, that it is something that needs its own home. But it also needs patients who want to help move that effort forward. We need to promote all efforts that benefit patients.

(Perry - I didn't see your post below mine until after I posted this. I hope it answers some of your questions about how I personally look at the structure. But, yes, I think we need a lot more discussion on the whole shebang; that's why we keep this thread and conversation going!)

[Perryc]

Quote:
Originally Posted by indigogo in the electronic patient registry thread

Isn't the reason that registries have to be legislated is so that they are mandated to be mandatory so that the data is statistically reliable for scientific purposes? I thought voluntary contribution to a registry negated the data reliability.

Regardless, the need for this is important. It is also a much different and more complicated project than the one being discussed on the other thread that is advocacy oriented. Just want to make sure there is a distinction. At some point there might be a way to merge the two, but the legal and scientific difficulties present in developing a scientific database should not hold up the establishment of one for advocacy.

I replied:

I agree with your assessment Carey. The 2 data bases being discussed are entirely different. The two could be married much later down the road, but for now they are entirely separate. I had suggested initially that the PWP medical record could be built on the advocacy list, but that may not be the best way to go. It would probably be better to build patient registry data on data elements in EMR's (electronic medical records and PHR's (personal health records)

The PD community unity for PWP discussion in the "whats wrong" thread has picked up a simple but potentially important task suggested by TommyI. A worldwide advocacy data base of PWP activists and can be a powerful tool for mass communication with these key patients. While it is no small task to keep the list up to date, it is something that could be accomplished with the web resources and skills that we already have. The objective is to establish participation criteria in this database that are no more than a low barrier to sign up. The strategy would be to building on the names list from existing mailing lists and web site links to spread the word quickly and maximize the number of people who sign up. Although I would like to add more data elements, it would detract from the goal of getting all PWP activists (large numbers) on board fast. Additional data may be requested once the members of this stabilize. Tom's idea to call it PD hope is a good title for the reasons given. If that activity can unify all the many talents of those who have been promoting it, and set up governing procedures to gain everyone's confidence, I am all in favor of it and will contribute as much as possible to the unified success

What is being discussed in the other thread is a patient motivated data base to add to knowledge and inform users by interactions with their peers and with their doctors which indeed requires more organization and discussion to come up with a plan that works. At this point I would like to find out about others who are interested in working on the creation of such tools. In the near future I intend to work on this very central issue in recovery from PD: self activation and hope.(patient centered outcomes.)

--------------organizational issues------------

Creation of either data base requires policies about who owns data, who has access to the data, etc which have been raised by this thread, but not answered. I would like to keep tabs on the progress of solving these issues to learn how its done, so we can replicate it when it comes time to work on the second data base.

This thread started by a concern that the PD organizations were not necessarily responsive to PWP needs to particpate actively in our own care and in creation of the policies that govern medical research and delivery of professional care. The data base project(s) provide a vehicle to start patient run project(s), but what does this do for the Patient run organization? If it is not inclusive and comprhenive enough to represent all patient views, how is it different than other patient run efforts like PPP? So I cant see how these projects will solve the organizational problem that started this discussion. We may have to form a patient run steering committee first to unify our efforts.

Perry

[indigogo]

(This post is cross-posted in the new thread, "database discussion")

Seems like there's a lot of interest in at least 2 kinds of databases (email for advocacy & patient data for possible sharing).

Doc John's generous offer to us is pertinent to database formation. In order to move forward on this project as a whole, perhaps we should set up a meeting online with Doc John and those of you who are interested in developing the databases.

These are the questions I see; I welcome others to identify theirs as well:

1. Two databases?
2. One for email registration / advocacy / membership
3. One for other data gathering
4. Is Doc John able to host one or more of these?
5. How does Perry's project interface with Rick's proposal?
6. Is it possible to go forward with the simpler, email database first while we iron out the details of the second?

If you are interested in participating in the database process, give us a shout out here in this thread or PM me.

Doc John - what is the best way to set up a meeting with you?

For everyone: building a medical, potentially research-applicable database is a significant undertaking. I hope any and all of you who have an interest in this endeavor get involved. Remember - this is a patient-driven, patient-run project. Please take the time to think about getting involved in this unique opportunity to have a voice in the research process!

For those of you not interested in the details of the databases, join me for continuing discussion of how we build a website platform to host the databases plus create a place to gather the power of the patient voice.

Going back to the original post by Todd: I think there is a sense of powerlessness (is that a word?) about uniting the orgs for the benefit of the patients.

But I also know that we do have the power to unite patients in a way to harness that power. The goal is to be able to influence and educate all of the organizations devoted to Parkinson's disease about what the patients and our families and friends want and need regarding care, treatment, and cure. One of our "wants and needs" is a united organizational front. Perhaps we will have greater influence if we also present a united front.

[lindylanka]

Sorry I have not jumped in before to show support; Paula, I am sure there are loads of people who have been watching in awe! And hoping that all the work done by so many PD advocates, many of whose voices we no longer hear, is coming to fruition........

I've been following this discussion with great interest, both as a PWP and as someone who was involved in a (failed) attempt at getting something going here in the UK that was patient led. The reasons for that failure were many, but one of the biggest was that the efforts made were not recognised by the sole org that represents the charity end of UK PD interests. So over here we have the opposite to you guys in the States - we have too few and you have too many!

What strikes me most about the discussion is that if you applied the ideas that have been batted around to something non-medical, but with the same grass roots intention you would come up with something that is very similar to the on-line lobbying groups - one of the best known is avaaz - that also work on the basis of being effectively a list, which is then used to lobby for different issues, the list member then being free to add their weight to any issue that they feel strongly enough about. As a model for patient led advocacy and as a means to put pressure where it is effective it would seem to me that data generated by USE of the list could then help create sublists that would be dynamic and effective because they would tap into the things that individual members of the group would identify with and wish to engage in. This would also create a means to identify the issues that are most important to PWP's, and a way of presenting this particular type of data (in terms of advocacy) to the existing orgs as an authentic 'voice' of PWPs internationally. I have to say that I do NOT think that there should be any separation in terms of the US and the rest of the world! While a huge amount of the work and effort will and does come from the US, the way forward is of neccessity internet based, and therefore has no borders. There are already people in many countries who in some way have been active in advocacy, certainly of Joop in Holland, but there are also people in other european countries; australia, canada and india spring to mind too.

Sorry I think I have got a bit enthusiastic, and if my rather long sentences are hard to decipher, my apologies....... I am excited by the possibilities, for medical knowlege,for advocacy, and for a collective voice for us all. You Tube video/s should not cost much, the technology is there, and it is not all about spending huge amounts of money, but much more about having a great idea!

I love the idea of decision making by consensus but feel that any new venture starts of with a core group of 'ideas' people who trigger the momenturm. This is what is unfolding right now..... Could there be a statement of intent and a proposal, or something similar to a mission statement that condenses the core aims, all the detail can then be worked on from there. It is easier to get consensus on the heart of the matter......... that would be what people would sign up for, and would identify with........

Just doing this, making it happen will give exactly the kind of unified voice that the non patient led orgs could listen to......

Best wishes in all endeavours, and thanks for this discussion....
Lindy

would love to be of use, if at all possible........

[indigogo]

lindylanka - thanks for responding here and in the database thread - I hope others offer their voices as well!

Your suggestion to look at other grassroots efforts is a good one; I've never heard of avaaz, but will check them out immediately. I also agree with your sentiments regarding keeping the effort united globally.

I especially want to bring attention to your statement:

"I love the idea of decision making by consensus but feel that any new venture starts of with a core group of 'ideas' people who trigger the momenturm. This is what is unfolding right now..... Could there be a statement of intent and a proposal, or something similar to a mission statement that condenses the core aims, all the detail can then be worked on from there. It is easier to get consensus on the heart of the matter......... that would be what people would sign up for, and would identify with........"

This is so true; we need all kinds of people with different skills. I am much better at the big picture; not so good with detailed follow up. I have been part of other collaborative ventures before, specifically in the area of mission development. It's great to get input from someone who has been monitoring this discussion that it might be time to put one forward. I'll try and take a stab at a draft version for community revision. It will be a great way to determine if we are all on the same, or similar, page.

Welcome to the conversation!

[indigogo]

Following up on Lindylanka's suggestion to devise a "statement of intent and a proposal, or something similar to a mission statement that condenses the core aims, all the detail can then be worked on from there. It is easier to get consensus on the heart of the matter......... that would be what people would sign up for, and would identify with........"

I've come up with the following draft statement that combines words from many of the posters in this thread. PLEASE join in and edit - change - add - at will! I have no ownership of this; I really want this effort to go forward, and be successful - the only way to accomplish this is if it is owned by the entire community!
-------------------------------------------------

People with Parkinson’s Global Coalition for Hope

United by incurable disease, common purpose and shared humanity to speak as one voice for people living with Parkinson’s disease.

The Coalition is comprised of Parkinson’s patients, their families, and friends. Our mission is to enhance and accelerate efforts to find new treatments and a cure, and to promote best practices for quality of life. Our goal is to unify the Parkinson’s patient community through an internet database for advocacy, action and research. We claim the right and authority to represent our own interests. Our guiding principle is HOPE THROUGH ACTION.

In order to advance our Mission and accomplish our Goals, we:

Encourage patient involvement/advocacy
Collect and disseminate information of particular importance, scientific and otherwise
Canvas opinion on issues
Petition on behalf of PD patients, and
Issue Press Releases on topics of concern to PWP

We do this through the operation of a website that collects information for several databases and acts as a platform for the promotion of patient-driven projects worldwide.

In the words of Tom I:

”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.”

[paula_w]

Lindy,

Love is a perfect word. Thank you for your post, and your writing is excellent [always thought so].

I am taking care of my father this week and he doesn't have a working computer - so that's tomorrow's project - to try to get it up and running. I needed to shut up for awhile anyway; I'm sure you may have noticed ...lol

Carey i don't know if you've heard privately from Doc John but he did say that pms with multiple addresses would work for communication - at least for starters. This project can't stop for even one day.....I haven't read your post closely yet but I will!

So many ideas my brain is ready to explode. I'm very excited about this and with so many working together we have to make an impact.

A word for those working with the orgs - you are very much needed and don't abandon your work. Orgs took some hits and deservedly so, but the pwp working with them serve a very important purpose. We are just branching out .....and it is bringing hope where it is sorely needed.

peace and love from a baby boomer - still taking too many drugs - who would have guessed? If we would have predicted that we would be an entire chemical generation , they would have told us we must have holes in our heads......
paula

[Curious]

if you end up using nt and the software here and need help, let me know.

you can send pm's up to 25 people at a time.

social groups can be set and used like a sub forum.