punkish: Citizen-Sourced Data Commons

name: intro
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# Citizen-Sourced Data Commons
##

•

Puneet Kishor (Plazi)

Released under a [CC0 Public Domain Dedication](https://creativecommons.org/publicdomain/zero/1.0/).

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## Help

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notes here

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.left-column[
### researchers don't share
]
.right-column[

because
- academic pressures
  - fear of getting scooped
  - pressure to publish
]

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.left-column[
### researchers don't share
]
.right-column[
because
- academic pressures
  - fear of getting scooped
  - pressure to publish
- health/medical specific pressures
  - fear of leaking PHI
  - ethical considerations
  - IRB
]

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.left-column[
### researchers don't share 
### clinicians don't share
]

.right-column[
because
- regulatory hurdles
- ethical considerations
- technological lock-in
]

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.left-column[
### researchers don't share 
### clinicians don't share
### consumer device makers don't share
]

.right-column[
because
- don't want to lose the strategic advantage
- technological lock-in
]

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## The only solution

* public generates, protects and holds data
* easy to understand (and give) consent is key
* assignment of rights makes attribution easy
* contractual commons ensure everyone plays by the rules
* a damage-mitigation mechanism provides a safety-net

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**Citizen’s Data**

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**Citizen’s Data** via **Different Sources**
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**Citizen’s Data** via **Different Sources** that are **Qualitatively Different,**
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**Citizen’s Data** via **Different Sources** that are **Qualitatively Different,** with [**Citizens Consent**](Citizens-Consent),
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**Citizen’s Data** via **Different Sources** that are **Qualitatively Different,** with [**Citizens Consent**](Citizens-Consent), are stored in [**Consolidated Repos**](Perfect-Health-Repo-Desiderata) making data available at **Varying Levels of Openness** and **De-Identification** made possible by a [**Health Privacy API**](Health-Privacy-API). The repos are managed by a [**Shared Governance**](Governance-Model-for-Health-Repo) enabling **Reuse** 
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