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Unilateral
De-Silo of Human Datasets
Data Re-Identification and Return
via Hosted Patient Domains/Websites
Alice Rathjen @...
Do You Work with Human Datasets
and want “Open Data”?
Talk your employer into becoming
a domain registrar and convert
your...
How To Create An
Internet of Human Beings
1. Move each human data set to a personal domain/site.
2. Re-identify and return...
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Unilateral De-Silo of Human Datasets

Researchers can unilaterally de-silo their human datasets by becoming patient data domain registrars (with patients select the terms of service for accessing their data). The future of health IT is data re-identification, data return, and human data self-organization based on coded patient intent.

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Unilateral De-Silo of Human Datasets

  1. 1. Unilateral De-Silo of Human Datasets Data Re-Identification and Return via Hosted Patient Domains/Websites Alice Rathjen @dnatimes 10/2016
  2. 2. Do You Work with Human Datasets and want “Open Data”? Talk your employer into becoming a domain registrar and convert your siloed data into hosted patient’s websites Alice Rathjen @dnatimes 10/2016
  3. 3. How To Create An Internet of Human Beings 1. Move each human data set to a personal domain/site. 2. Re-identify and return the dataset to the patient via a personal domain/website. 3. Create patient friendly materials transfer agreements that provide a Terms of Service for user accounts access to patient site (via GA4GH consent codes). 4. Build out functionality so patients can control what data user accounts have access to – including the ability to revoke access. Let patients annotate data with intent or pick a researchers as guardian to do so. 5. Offer widgets for new technologies/features as they become available to build out a “digital human being”. Alice Rathjen @dnatimes 10/2016

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Researchers can unilaterally de-silo their human datasets by becoming patient data domain registrars (with patients select the terms of service for accessing their data). The future of health IT is data re-identification, data return, and human data self-organization based on coded patient intent.

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