To analyse pre-existing health data, we applied for ‘section 251 approval’ which was reviewed by the Confidentiality Advisory Group (CAG). CAG is an independent group of lay people and professionals which provides expert advice on the use of confidential patient information without consent.
Participants in the interviews will provide consent.
For the surveys, consent will be inferred by completion.
Participants in online forums will provide consent by joining the forum.
The audit and national data we will apply for includes data on treatment, diagnoses and outcomes from paediatric intensive care, adult intensive care and other hospital stays and follow up appointments
This means that all your information will be kept private and UCL will not know your name, date of birth, or address.
Your health data and any interview and survey answers will be kept on secure, password protected servers at UCL and GOSH.
If you have taken part in the interviews, we will only hold your contact details with your consent.
All the data used by the OPTICAL study will have any information that might let people know who you are taken out and replaced by a study ID number.
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