A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.

National Data Opt-out and Primary Care information - use MY data report

The National Data Opt-out was introduced on 25 May 2018.  In the initial months after its introduction, information from several use MY data members indicated that their GP practice had given either confusing or erroneous information about the National Data Opt-out and patient data choices.

While hoping that the examples were not typical, we thought it would be useful to find out by casting the net wider amongst our membership, with the aim of feeding back in the first instance to the Royal College of General Practitioners. 

use MY data has been actively engaging with primary care for some time, in order to understand the challenges primary care faces in relation to patient data and learn how members might assist in this area.

We ran a survey of our membership throughout August and the results are presented in the report.  Prior to publication, we have shared the report with:

  • Royal College of General Practitioners (RCGP): the lead for the RCGP’s Patient Data Choices Programme & the RCGP’s representative on the National Data Opt-out Advisory Board
  • NHS Digital: representative on the National Data Opt-out Advisory Board
  • NHS England: representative on the National Data Opt-out Advisory Board

Please direct any queries to coordinator@usemydata.org.uk