Registries for all presented by @sharonfterryIndustry 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.
– 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. https://www.privateaccess.info
“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