Dear all

Apologies for the long post but I have put some time into thinking about all this -- with the following results.

My Take

1. It is my solemn belief that it is patients who have the passion and the focus to shore up some of the gaping holes in the therapeutic development process. The problem is there are just not enough of us who are active.

2. Patient organisations have to work within a framework, within the system. They are risk averse, as indeed they should be – after all they are spending other people’s money.

3. Patients on their own are prone to strange emotions: neurosis, sensitivities, and disorganisation. Getting things done is difficult.

4. YET we have a role on our own – otherwise who is going to communicate all the things we need communicated. There are certainly times when only the voice of the patient (without the buffer or censorship of a “patient organisation”) will do. WE are the only ones who CAN say – “this decision affects my health.” That gives us power. If we all say the same thing, then we have a far more important thing than power – influence.

5. The problem is we don’t say the same thing and we defeat ourselves with petty infighting and an inability to agree either by consensus or through leadership. This is not really our fault, we are packed full of various medicines after all. So Catch 22.

6. BUT and here is the crunch, we are bound on this forum by one medicine which is common to us all.

We have all prescribed ourselves with the one medicine which treats every part of us; mind body and spirit.

HOPE

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.

A database of patients worldwide does not have to be complicated. It simply needs a central co-ordinator/administrator and no-one should underestimate the work involved in that.

7. The key to a successful database is as Carey highlights consensus.

So why don’t we ask everyone to answer the following questions and see what materialises.

1) Do we need a global database of patients?
2) What is the database for nd what information do we need from those registering?
3) Who runs it?
4) How do we promote it?
5) Should there be a video?
6) What should the video be about and who should organise it?
7) What rules should be applied to the use of the database?
8) Do we use the database for commercial purposes?
9) How are future decisions about the database made?
10) What do we call the database?

For what its worth here are my views.

1) Do we need a global database of patients?

YES

2) What is the database for and what information do we need from those registering?

To encourage patient involvement/advocacy
To disseminate information of particular importance
To canvas opinion on issues
To petition
To issue Press Releases

We only really require - name, age, sex, year of diagnosis, region and country and email address.

3) Who runs it?

I propose there is a committee of four or five people per region and that there are two regions US and the Rest of the World

4) How do we promote it?

Word of mouth and a central website where people can register. The front page would direct people to one of the two regions which would link to two totally separate pages.

5) Should there be a video?

No. I can’t see the point in it really. And it would be expensive.

6) What should the video be about and who should organise it?

N/A. What we need is hard data and a clear message as to why it is important. Then we gain momentum through word of mouth and exposure

7) What rules should be applied to the use of the database?

I think best to leave that decision until a bit later

8) Do we use the database for commercial purposes?

Absolutely not. That would defeat the object. The database should be used by patients for patients only.

9) How are future decisions about the database made?

The two committees would share everything and would be responsible for making decisions on what is communicated to the database and how.

10) What do we call the database

PD-HOPE



I see since I started this note that things are moving on with Doc John which is great news.

Look forwad to comments