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Unilateral
De-Silo of Human Datasets
Data Re-Identification and Return
via Hosted Patient Domains/Websites
Alice Rathjen @dnatimes 10/2016
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
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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Unilateral De-Silo of Human Datasets

  • 1. Unilateral De-Silo of Human Datasets Data Re-Identification and Return via Hosted Patient Domains/Websites Alice Rathjen @dnatimes 10/2016
  • 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. 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