New role for use MY data - NHS England’s Research Advisory Group

use MY data has been invited to join NHS England’s Research Advisory Group, bringing patient voices direct to discussions about the use of patient data for research. Executive Group Member, David Snelson attended a planning meeting of the Research Advisory Group on 13 November, in a scoping capacity.  Subsequently, after discussion and working through due processes around transparency, the Executive Group took the unanimous decision for use MY data to join the Research Advisory Group.  This decision is recorded in the meeting notes of the Executive Group & Secretariat meeting on 29 November.   

To ensure they are a safe space to present and discuss problems and find solutions, the Research Advisory Group meetings will not be fully minuted.  However, there will be outputs from each meeting, which the organisers are keen for use MY data to disseminate as widely as possible.

As a minimum for use MY data, in line with our Standards for engagement with external bodies, we will publicise that we are involved in the discussions, even if we cannot reveal the content of those discussions.  We will actively work to avoid any potential transparency issues, by continuing our due diligence work and always working within our guiding principles and standards.

NHS England’s (previously NHS Digital’s) information about the Research Advisory Group is published here, with details of our membership to be added.

The outputs from the 13 November Research Advisory Group planning meeting are here.