[jeanb]

A new thread to explore Tom Isaac's idea about a global database for PD

Originally Posted by TommyI

Hello all. Just joined Neurotalk because I was directed to this exciting thread by Suffolk Chris. So you've him to blame.

I have not read all of the posts so forgive me if I am saying what has already been said. In a sense I wanted to come to this page fresh anyway to see if my thoughts do correspond with any of yours.

My view is that patients are the only way to accelerate the cure - with passion, drive, media profile, insight and teamwork.

It is the final one of these which presents the biggest problem. The US has a number of PD organisations and then there are also numerous patient-only internet and advocacy groups. You, in a sense, suffer from too many factions - too many slightly opposing views and objectives. In the UK, we have one organisation the Parkinson's Disease Society and most patients are happy with them. They provide a good service and everyone knows about them. But by the same token they struggle to engender the passion and determination and the sheer sense of willpower demonstrated in this forum and others like it from the patients themselves. The UK is far more prone to inaction or reaction rather than proaction.

So may be the disparate nature of the US PD organisations has made you lot more engaged with your illness, more emotive and more motivated. Perhaps the frustration you have in your organisations is an opportunity to form a Patient Alliance which does not have to be anything more than a database of patient's email addresses.

There is enormous power in "Patients doing it for themselves," but this power is magnified proportionate to the number of them doing it. Other organisations which are not patient led cannot get involved with books like Monkeys in the Middle, because they are trying to work within the system. It is right that they should. But there are times when the system does not work for us e.g. GDNF, speed of clinical trials, side effects of drugs etc.

It is on these occasions that we need access to a strong, credible and completely independent patient-only voice.
We all have access to people with Parkinson's - yes? Why not write to them all and ask if they would mind their names to be added to a central database
which could be controlled by a central Steering Committee which could co-ordinate campaigns we feel really passionately about backed by huge numbers of patients. This is a way to make a real difference.

This could be US-only or even better it could be global. It would be fairly simple to organise and would make real impact fast.
I would be happy to propose to my organisation, The Cure Parkinson's Trust as a patient-led Charity, that we might consider being the administrators of the database, if that helps this project get underway. We have just linked up with the PDUK for this very reason anyway.

Once we have the database we could really raise the profile of Parkinson's through sheer weight of data. We could have a global initiative to call for the release of GDNF from Amgen, we could petition on issues which are fundamental to patients but which do not fall within the scope of so-called "patient organisations" and we could even raise funds for specific things we felt were worthwhile on a global scale. All the initiatives could be backed up by the results of surveys which could come from a central database resource or the administration could be handled on a more regional basis and communicated to the Steering Committee for dissemination.

It may sound far-fetched, but I think this is do-able.

Views/criticisms welcome - this is just an idea at the moment and I have not got any further than this in my own head. It certainly needs further discussion if you like the concept.

Tom Isaacs

[leonore]

That is an absolutely brilliant idea. We all have our own e-mail lists as a data base, but to create an umbrella one to reach out to community of Parkies to take action on issues we find pressing, and which we consider our own PD-generated agenda, versus those dictated by non-PD community--just wonderful.

A caution: some of us (like me) with Clognition issues, tend to have trouble prioritizing, (and with impulse control) as per which ideas to sit on for awhile versus which ones to put out there, , (yeah, executive function breakdown) and then we take on too much, and thus send out too many e-mails to our cohorts with our eternally-popping great ideas. Exponentially, that's fifty or so national activist/advocates asking all of us to take action on goodness-knows-how-many new ideas! How do we help each other fine-tune?
Even the time it takes to read all the incredibly interesting threads on Neurotallk from all of you has become a time-suck, even, (shockingly!) pulling me away from remembering to take pills, or far worse, leaving my house when I switch "on"---(I'm quite certain that this is far from
unique!)
Anyway, thoughts to muse on. Have to go eat and leave my house...Leonore:

[jcitron]

This is an excellent idea. Those of us with an IT and MIS background could easily come up with a database server solution that would allow us to track the information we need.

The thing is if this is to go forward, we need to come up with a solid consistent format for information so that everything is the same no matter which way the data is retrieved. A large collection of information that is not easily retrieved is just a large collection of information. The data needs to be accessible and yes secure from the outside world because we don't want bots harvesting email addresses or other information from the net.

There's a lot ot think about, but it really is a good idea.

John

[myownarcadia]

We were working on something like that over here in Spain during the last weeks. A patient database.
This means we support the idea, of course.

Nevertheless, there are some issue that must be taken into consideration before starting data collection.

Quantity of data: which info are we thinking to collect?

Quality of data: define criteria for "accept / validate" trustability of data received (over the Internet even a dog can date Claudia Shiffer )

Data storing, accessibility and administration: in EU storing personal information is a "touchy" point. A few legal issue to deal with.

Data security: we must provide a reliable mechanism to prevent this Database to get in the wrong hands (you can think about a few organizations o firms really interested in this DB)

I stop here 'cause its hard for my to read very long post and I imagine in not the only one.

Regards

Fulvio (Devil's Advocate)

PD: are you thinking in something like the existing "Patients like me" database?

[lurkingforacure]

Great ideas, input, and momentum....our biggest concern with something like this down south is privacy...this could easily be taken care of by using an anonymous intermediary LIKE Craigslist uses (wouldn't be using craigslist nor asking them to let us use them)...see how they work at www.craigslist.org should be very easy to do (no, I have no tech experience or knowledge!). If privacy were assured with something like this, a lot of people with reservations about privacy would have a much higher comfort level. Just a thought.

[Curious]

lurking...i'm going to edit your link. that does not go to craiglist.