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


Project: National Data Opt-out: information to patients?

Our report “Primary Care’s pivotal role regarding patients and their data”, produced following our workshop in October 2017, was produced ahead of the National Data Opt-out was initiated in May 2018.  use MY data members wanted to focus on the challenges facing primary care.  From our own straw polls up to December 2017, we felt that GPs did not seem to have been informed about the Opt-out and our members wanted to do all they could to aid GPs in this area.

use MY data had received responses from several GPs who told us that they do indeed receive formal training on data protection and confidentiality, but did not receive specific training about the rewards and risks of sharing and using patient data for secondary purposes.

Members felt that this was a significant omission in helping practice staff have a balanced conversation with patients about their data choices.

In June 2018 use MY data produced a short paper specifically looking at the implications of the National Data Opt-out for cancer patients.  By November 2018 this had been updated to reflect changes in policy by Public Health England to the way that they are managing the National Data Opt-out requests.

This paper has been available for download and has been widely circulated at national and local conferences and events, including Britain Against Cancer in December 2018.

Additionally, in order to understand some of the reasons behind the huge variation on opt-out rates by GP Practice, we have been working closely with NHS Digital on complimentary projects.

From January 2019 NHS Digital have been running a large-scale telephone survey of a sample of GP Practices to evaluate the implementation of the National Data Opt-out and the availability of information materials to practice staff and patients. 

NHS Digital have done significant work during the transition process, taking actions recommended by the National Data Guardian, producing a clear website for patients, producing information resources for GP Practices, and writing to patients to inform them of what was happening with their previous Type-2 preferences. 

As things stand, NHS Digital are unable to do much more with regard to high opt-out GP Practices as the national data opt-out status is in the hands of patients themselves. However use MY data wanted to do further work as an independent group to identify further actions GP Practices could take.

use MY data are currently running the same survey questions, plus two others specifically about the historically high opt-out rate, for the 25 practices with the highest rate of opt-out.