In England, everyone has the right to say “no” if they don’t want their NHS health information used for research or planning through the national data opt-out. So, if someone has decided they don’t want their health data in IORD, and has opted out on nhs.uk/your-nhs-data-matters, it won’t be there.
Using the national opt-out like this can make it harder to do research that matters, and to work out how to give good care and treatment. It means we can’t really figure out how many people are affected by different infections in the whole population if this information isn’t shared. It makes it harder to understand how microbes are spreading in hospitals and across Oxfordshire because we might miss some of the people who are part of the infection chain. In other words, it’s like having a puzzle with missing pieces, so no one can see the whole picture.
If someone finds out that their information is already in IORD but they’d rather not have it there, they can send an email to [email protected] to talk about it.
- It is important to know that to take someone’s information out of IORD, we need to know their name and NHS number. This is because we need to tell the NHS database which sends data to IORD which people not to send data for. This means we need more personal information about the people who want their data removed than about everyone else.