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About your data

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Whose data is available through INSIGHT?

The data comes from all patients (except those who have opted out of sharing data for research purposes) receiving routine care at Moorfields and UHB, including data already held and data collected for research (where consent has been given for future analysis). 


The INSIGHT datasets will continue to be updated over time. This is important, as it ensures the data accurately reflects the most modern treatments. Additionally, as the datasets increase in size, so does their power to answer research questions.


The INSIGHT Research Database will be updated quarterly with newly generated data and to remove the data of patients who have opted out of data-sharing via the NHS national opt-out (see below). 

How will INSIGHT data be kept safe?

Data safety is one of INSIGHT's founding principles. Only safe, anonymised data is made available through INSIGHT, which means that any identifying information (such as name or address) is removed before researchers can access it. You can read more about how and why data is anonymised on this factsheet from the charity Understanding Patient Data.

INSIGHT will provide secure access to data for carefully vetted researchers and protect sensitive information from falling into the wrong hands.

 

We adhere to the ‘Five Safes’ for data storage and access – a set of principles adopted by the UK Office for National Statistics. They are:

  • Safe data – ensuring data is held securely

  • Safe projects – ensuring research will benefit patients 

  • Safe people – ensuring researchers are trustworthy

  • Safe settings – ensuring there is no misuse of data

  • Safe outputs - ensuring individuals can't be identified

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Your data, your choice

Under General Data Protection Regulations, you have the right to ask INSIGHT's NHS partners  if they are using or storing your personal information. You can also ask them for copies of your personal information, verbally or in writing. This is called the right of access, and is known as making a ‘Subject Access Request’:

You can find out more about your choices by reading the privacy notices from our NHS Foundation Trust partners:

As part of the national data opt-out, INSIGHT promises to respect any individual's right to opt out from the use of their health data for medical research. To opt out of sharing your patient data for all research and planning purposes (including INSIGHT), visit the NHS Digital website.

 

 

Images (top to bottom): 1) A patient being examined at Moorfields, 2018. Credit: Anton Webb / UCL Institute of Ophthalmology, 2018; 2) Large safe. Credit: Pixabay; 3) A scientist working in the lab at UCL Institute of Ophthalmology, 2018. Credit: Anton Webb / UCL Institute of Ophthalmology

Please note, photos of people in shared spaces without facemasks pre-date the 2020 Coronavirus pandemic.