Discovery, Research, and the Economics of Human Data OUR REQUEST: As supporters of our community, we are reaching out to you. CFTechnology.org is at a tipping point- we are poised to become members of the Creative Destruction Labs 2020 cohort and are asking for letters of support for this next, important step. No formal commitment is needed at this stage, simply a strong expression of interest. Time is of the essence and we thank you in advance! BACKGROUND: Cystic Fibrosis (CF) is a genetic disease with many co-morbidities. Individuals with CF cannot be together due to the danger of cross infection. They are a niche and high-tech community, virtually together on the forums at cysticfibrosis.com and ancillary social media since 1996. They have created a virtual WIKI with more than 2 million saved and searchable messages. Their data is uniquely valuable. They are the gateway to personalized medicine. Through surveys with over 1200 respondents, we have found they are ready to follow the provenance and workflow of their personal data. PROPOSAL: To create: a 21 century Model for Personal Data: Discovery, Research, and Economics This involves 10 CF Health Opinion Leaders who will help create an app to access, permission, and market personal data. When the app is ready, we will move to 200 CF app users. Our proposal has been initially accepted by CreativeDestructionLab.com of Canada (CDL). When finalized, we will be one of 25 companies accepted into their program for mentorship and growth. THE NEED: Two sponsors willing to work with the community creating a personal app allowing for multiple revisions. RESULTS: This “forward economic system” will be a model for all on how to ethically access, permission, and profit from our personal data. Sponsors will be acknowledged and touted world wide with their logos available on the app. They will have created a model for being able to access Real World Evidence from this community and beyond. IMPACT: This step in an unexplored and revolutionary direction will: Create 21st Century jobs Save Lives WE ARE READY!
