Health Data Ownership Manifesto

Data that reflects you should belong to you. You should control access. These include: your genetic code, your lab data, and your images to name a few.

These should be property to use as the owner sees fit.

Just as individuals can rent other assets while retaining ownership, individuals will be able to control access to their own personal health data.

As with other asset types, platforms can help match those with resources to those with a need for those resources and enable transactions between them.

We believe these rights, these platforms and these transactions will become fundamental, leading to new ways of engaging and transacting with the world.

We have attempted to capture what’s needed in this changing landscape in our Health Data Ownership Manifesto.

If you agree with the following, or if you have more to add, send us a note.

UnPatient Health Data Ownership Manifesto

  1. An individual’s access to data about him/herself is a fundamental human and property right.
  2. Platforms will be developed to enable the rights and transactions around such property. We support the development of these platforms.
  3. Monopolies on medical knowledge and information are unethical.
  4. Individuals have a right to any data that comes from a measurement of an internal state of their body, including medical devices.
  5. Individuals own their lab data (see CLIA).
  6. Individuals have the right to their data in standardized, machine-readable forms.
  7. Individuals have the right to have this data analyzed by any human or machine intelligence that they choose.
  8. Individuals will be able to store, donate, share or even sell limited access and limited rights to their personal data resources.
  9. Individuals have literally died waiting for their lab data. Lab data should be made accessible to individuals as soon as it is available.
  10. Medical regulations exist to protect individuals from medical harm. Data, ideas and information in and of themselves cause no medical harm.
  11. Individual may have access to metrics and analysis about their own body without a doctor’s permission as long as accessing that data poses no medical risk.
  12. Individuals have a right to health data privacy. Rights to sharing must be established with the individual it originates from, or their legal agent, in advance of sharing.