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