The document discusses the future of health records and genomic data on the internet. It proposes a system called the "Biological Network - Internet of Human Beings" where individuals would have portable health records stored with a trusted registrar. This would allow for real-time consent over exponential amounts of health and genomic data being collected in a decentralized, patient-centric manner while maintaining data privacy. Quality ratings and categories would help provide dynamic interpretations and reports from the individual's raw biological data organized over location and time.

1. The Internet of Human Beings
Nov 9-12 , 2014 | California
Exponential Big Data = Self Organizing Genomes With Real Time Consent
Alice Rathjen © 2014 -

2. Gene Patents
De-Identified Data
Governments Jurisdiction – with some govts owning/selling their populations genomes
Self- Organizing Genomes with Real time Consent
1st Genome
Alice Rathjen © 2014
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2nd Genome
3rd Genome
4th Genome
The Evolution of Our Digital Humanity
Digital Citizenship & Human Autonomy
The Emergence of Digital Human Rights

3. The Current Web
The Future Web
Mobile
Internet of Things
Search
E Commerce
Social
Biological Network - Internet of Human Beings
The Old Web
Health Care IT & the Future Web Health Records Evolve Into Biological Domains
Exponential Growth in Data from the Body
Alice Rathjen © 2013 -

4. What Happens Once Genetic Data is Added to a Health Record?
Health Record
Genetic Dataset
“Sticky” Universal Health Record
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5. Health Data Becomes Identifiable Big Data = Big Liability
Health Record
Genetic Dataset
De- identified Data
De-Identified
Data
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6. Solution : Health IT Network = Biological Domain Registrar
Health Record
Genetic Dataset
Portable Patient Health Record (patient picks trusted registrar)
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Real Time Consent

7. Future Health Record Human = Node On The Network
Biometric
Map of the Body
Map of Genome(s)
Lifestyle, Environment
Patient Centric Bi-Directional Information Flow
Alice Rathjen © 2014 -

8. The Human Body & Genome In Time & Space
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Real Time Consent
Data Organized by Biometric, with Location & Time
Patient Raw Data Stored Separately
Dynamic Interpretation & Reports
Needs to be able to Scale Indefinitely

9. Dynamic Health Information Quality Rating
Quality of Science
Medical Utility
Viewing Risk
(Graded) A,B,C,D,F
W = Withdrawn , I = Incomplete
(by Scientific Community)
(by Health Care Providers/ Payers)
E = Everyone PG = Physician Guidance R = Restricted
(Medical Ethics, Counselor)
Category
Rating
(Five Star Rating)
(i.e.Movie Rating)
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10. User Accounts
Biological Domains
Old Big Data vs. New Big Data
just data
JUST DATA
Alice Rathjen © 2013 -