Every day we generate a huge volume of information about ourselves, whether it is updating our Facebook page, using a store loyalty card or visiting the bank.
This can be really useful, but it’s always good to know who gets to see this data and what they’re able to do with it. Information about our health is some of the most sensitive data there is and we think that everyone should know what happens to their patient records.
This is particularly important now, because the situation is changing.
The NHS is creating a new system to share information from GP records to improve how they plan and deliver our healthcare. This affects all of us and the NHS has delivered a leaflet to every household explaining the new system.
It’s really important that everyone understands these changes because we all have a choice about whether or not our data is included in this system.
Where do we come in?
We’ve written before about how important health information is for research and we want everyone to know how secure data sharing can save lives.
The decision you make about whether or not you share your information will affect your ability to take part in research and we need to make sure that everyone understands the implications of their choices.
That’s why we’ve joined together with other research charities to run a national information campaign explaining the value of patient information in research.
Words like “information” and “data” can seem a bit vague and it’s difficult to know exactly what the link between patient information and research is. We’ve also produced the following infographic to help you visualise how your visit to the GP could translate into research. (Note: this graphic will not display properly in email, so is best viewed in a browser.)
Patient records: your choices
The way that patient records are used in England is changing.
The choices you make could affect medical research, your chances of being invited to join a clinical trial, and how the NHS is run.
What do I need to do?
If you’re happy for your data to be shared, then you don’t need to do anything - the upload will happen automatically.
If you’d like to object, or just to discuss your options, you need to get in touch with your GP surgery.
When you’re deciding what to do we want to make sure that you’re making an informed choice and, in particular, that you understand the amazing things that researchers can do with your patient information.
But, it is not for us, or anyone else, to tell you what to do. This decision is yours.