Care.Data and Your Medical Records – You Have A Choice…

Sharing Your Medical Records

By now you should have received the new NHS leaflet ‘Better information means better care’.  However it would not have been addressed to you personally and in many cases has been included in junk mail deliveries.

The leaflet explains the benefits and potential risks of your electronic health record being shared with others.  From the end of March, details from your medical record will be automatically uploaded from our clinical system in a form that can identify you and will include to following information:

  • NHS Number
  • Date of Birth
  • Gender
  • Ethnicity
  • Postcode
  • Medical diagnosis (including cancer and mental health) and any complications
  • Referrals to specialists
  • Prescriptions
  • Family history
  • Vaccinations & Screening tests
  • Blood test results
  • Body Mass Index (BMI)
  • Smoking & alcohol habits.

The ONLY way to prevent this information from being uploaded is to opt out in writing (download & complete our Care Data Opt Out Form).  Currently we are not able to opt out all patients; you have to do this individually.  Our responsibility is to ensure that patients are made aware of their choices including the right to opt out of the Care.Data Scheme.

If you do not inform us of your wish to opt out then the information will be extracted and uploaded automatically to the Health and Social Care Information Centre’s (HSCIC) database.  Once this has happened, you will not be able to get your data deleted.

The information will be used for purposes other than your direct medical care (i.e. secondary uses) and could become available to organisations outside of the NHS. This database is totally separate to the Summary Care Record and opting out of inclusion in one database does not mean that you have automatically opted out of the other.

Care.Data is not about direct patient care and you should be reassured that opting out will not have any effect on your medical care.  You will continue to receive excellent care whether you choose to opt-out or remain in the service. Care.Data is about the use of your information by other parties that are not delivering care directly to you.  At the moment it is not clear which organisations will have access to your data, why they are interested in accessing it or how they will use it.


Your Options

You can choose to do nothing and your health record will be automatically copied and sent to Care.Data.

You can choose to opt-out now.  You can always change your mind and opt-in again at a later date if you decide that it is safe to do so, or your questions and concerns have been answered.  Parents may opt-out children under the age of 16.


More Information

There are a number of websites that provide more information, these include: