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Let’s get a handle on healthcare data privacy

September 18, 2021 4:00 PM
Originally published by UK Liberal Democrats

Healthcare data matters. But so too does privacy. The collection and sharing of population health data is vital in advancing medical treatments and improving our nation's health. However, the public has a right to know exactly how their data is collected, stored, and shared.

The Government has quite happily been collecting our healthcare data without paying much attention to privacy. It's time that changed.

We should be able to trust our government to handle our information securely and with total transparency.

The Government's latest use of patient data through the now paused GP data sharing scheme has not been communicated clearly to the public. They have made little effort to explain how the NHS shares health data. They have proven to be incredibly adept at undermining public trust.

Today at our Autumn conference Liberal Democrats agreed that this must be fixed. We have agreed to pressure for a rigorous process to protect patient healthcare data in this country.

Our members called for:

  • A five-point 'Health Data Charter" which will set out guidelines for sharing of our data. It will determine whether any sharing is in the interest of the public and the NHS, and will lay out rigorous safeguards on everyone's private health information
  • The creation of a 'Sovereign Health Data Trust'. This will be an independent body of specialists including clinicians and patient representatives who will oversee the Health Data Charter and keep our data safe.

We want to enable new medicines, therapies and treatments whilst protecting privacy.

Our members believe that healthcare data collection and sharing done well is overwhelming in the public interest.

We want to enable new medicines, therapies, and treatments whilst protecting privacy.

We cannot create a free and fair society with the current government's blatant disregard for our data. We need to hold this government to account and make it clear when, why, and with who public health data is being shared.

This motion is a clear path towards restoring public trust in healthcare data sharing.