NHS Confidentiality Advisory Group
▪ 2013 -
Between 2013 and , Ada Lovelace Institute started a participatory data governance process exploring the governance of data related to sensitive patient data.
The process involved users of the UK National Health Service and made recommendations concerning the sharing, analysis, re-use, and regulation of use of data by academic and NHS researchers.
The process adopted both individual and collective data governance lenses and involved the following components:
Confidentiality Advisory Group Meetings
The confidentiality advisory group has a regular schedule of meeting where applications for approval to use data are reviewed.
Each application is reviewed by a small team, with a lead reviewer. They are then discussed by meeting attendees.
The meeting must always include a lay member (i.e. not a medical professional).
There were 23 participants from a target group of a mix of medical and information governance professionals, and 'lay' volunteers with the time and capacity to participate in regular meetings discussing complex technical documents. (Intentional recruitment).
Participants were recruited recruited through a periodic open call and application process..
Background information was given through written briefing materials (online or as handouts) and expert presentations.
Detailed application materials are reviewed before each meeting.
The CAG may invite expert advisors to speak at meetings.
Confidentiality Advisory Group Precedent Set Pathway
The CAG, through discussion in full meetings, maintain a list of criteria where precedent in favour of allowing Section 251 use of data has been set. Applications that fall within the precedent set criteria can be consider by a subcommittee rather than the full CAG.
There were 23 participants from a target group of members of the Confidentiality Advisory Group (Intentional recruitment).
Participants were recruited periodic open call and application process.
Sources
HRA UK - Confidentiality Advisory Group
Confidentiality Advisory Group Standard Operating Procedures