jeanb
08-06-2008, 09:32 AM
A new thread to explore Tom Isaac's idea about a global database for PD
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
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