Hello,
My name is Dave, and I am working on a non profit portal with a small team of developers. The mission of the portal unburdenus.org is to give anyone in the world the ability to share information on and track side effects. We will accomplish this through the following method.
1. Allowing patients to define what a side effect is in their own words.
So many side effects that are experienced, especially from depression/ anxiety drugs, are very hard to articulate to someone who is not experiencing them, but they make total sense to another person who is on the same med and has the same side effect.
2. Data gathering of non identifying side effect related statistics.
We will gather non identifying statistics from each individual. Information on physical characteristics illness(es)/disease(s), medications and then side effects will be gathered together by our application.
NOTE: We will be using the terminology provided by the users when defining side effects in the data collection area.
3. Reporting
After an individual has created a profile we will then give them the opportunity to generate a report to share with their doctor.Each report will query the database for others whose characteristics are similar to theirs and then provide them with numbers and statistics they can print out and show their physician.
As I said above we are collecting non identifying information. As a part of our mission we will strive to make all interactions between us and the individual non-identifying.
In addition to the application we will be utilizing a wiki as a way to allow users to submit definitions of side effects. We possibly will use the wiki at some point in the future as a vehicle for symptom and disease/illness identification.
At this time we have just finished the initial migrations for the data modeling, and at this time are opening the project up to more involvement. At this time we have a need for developers, UI and graphics designers and AJAX gurus (we may need some additional limited data modeling in the future). Our goal is to assemble a team of between 15 to 20 people who will be contributing to an open source closed model project.
If this is something of interest to you please feel free to send me an email so we can discuss this further. If you have already sent me an email in the past and I did not get back to you right away I apologize as I had a personal family emergency come up in December and January.
I also will need help setting up tikiwiki on the unburdenus.com domain if anyone has any experience with this application. This will be our public facing portal to educate the public about unburdenus.org as it is in development.
Best Regards,
Dave
I am posting this invitation to other lists as well, and I apologize if you recieve this announcement on more than one list.
