Monday, November 19, 2012

#PIPHCA - Reg4All Registries for all diseases @sharonfterry

Registries for all presented by @sharonfterry

Industry sponsored registries exist. Time consuming and costly to build.

We need people and their data.

Biomedical research and healthcare are laggin in entering the INFORMATION age.

Individuals are collecting information in a fragmented fashion.

Reg4All merges:

- Disease InfoSearch
- Trials Finder

Trials Finder enables patient registration. 
Enables self-reported medical information

A gamified survey 
- Common Data Elements - Measure in a consistent way across diseases.
- Add Disease Specific information.

Engagement is critical - but why will people engage?

Data Today for Solutions Tomorrow.

The question comes down to why will people engage and how will they trust this group?
Drive this from the disease advocacy organizations.

The unique element is to to add privacy controls via Private Access.

"We try to do too many things with blanket access - We have to be granular and let people give permission" 

"People need to reclaim their health"

Go for all 13,000 diseases - the co-morbidity info will be astounding

The winners for this challenge will be announced on December 12th. - Watch out for it on: or