Controlling your Medical Records
* Opt-out by 25th August, 2021 *
Type 1 opt-out
You have the right to control how medical information about you is shared, disseminated or sold, for purposes other than your direct medical care – so called secondary uses (or purposes).
Secondary uses include projects involved in risk stratification, “population health management”, national clinical audits, research, healthcare planning, commissioning of healthcare services by CCGs, commercial and even political uses.
You can control your personal confidential information by expressing an objection, or opt-out, to your GP surgery, who will then add a special read-code, or electronic flag, to your GP record.
One such opt-out is known as a Type 1 opt-out (sometimes referred to as a 9Nu0 opt-out, after the flag added when expressed).
A Type 1 opt-out, when present in your GP record, should prevent identifiable information about you being extracted from your GP record, and uploaded to any other organisation, for purposes other than your direct care.
A Type 1 opt-out should then prohibit extraction and uploading for all of the following secondary uses:
- General Practice Data for Planning and Research (GPDPR) extraction
- Risk stratification schemes
- National clinical audits (such as the National Diabetes Audit)
- Extraction of de-identified information about you concerning any eMed3 Statement of Fitness to Work reports (i.e. sick notes), uploaded to NHS Digital, and subsequently passed by NHS Digital to the Department of Work and Pensions
- All extractions and uploading of identifiable information about you to NHS Digital, for any secondary purpose (so-called GPES extractions)
A Type 1 secondary use objection will in no way affect how healthcare professionals provide you with direct medical care or prevent them from accessing your medical record if and when appropriate, and with your explicit consent.
Secondary uses are not about information sharing between healthcare professionals. A Type 1, secondary uses opt-out:
- Will have no effect on anonymised or aggregate (numbers) information being shared within the NHS to help medical research
- In no way prevents you from agreeing - with your explicit consent - to partake in high-quality medical research at your GP surgery/local hospital/other health organisation, where you have given your explicit consent to be involved (i.e. you have been asked first).
More information regarding the Opt-Outs, can be found on the NHS digital website
National Data opt-out (NDOO)
You can express a National Data opt-out (NDOO) as well, and with both the Type 1 and National Data opt-outs in force:
- No record-level information whatsoever will be uploaded from your GP record to NHS Digital
- NHS Digital will have no information from your GP record to release, in any format, to any organisation, for any purpose
- NHS Digital will only continue to hold information extracted from your hospital records, as well as aggregate information (i.e. numbers) from your GP practice
- NHS Digital will not be able to release any information that clearly identifies you from the information extracted from your hospital records
Information about the “National Data opt-out”, can be found here: https://your-data-matters.service.nhs.uk/