Joint response to the IGARD draft terms of reference

The Health and Social Care Information Centre (HSCIC) has been consulting on the proposals for the establishment of the independent group advising on the release of data (IGARD) to replace the data access advisory group (DAAG).

The role of this group is to scrutinise requests for data releases, primarily under the Health and Social Care Act 2012 and the Care Act 2014. The remit of IGARD will expand on that of DAAG to enable improvements in decision-making in respect of data releases. The HSCIC intends the group should ensure transparency, accountability, participation, quality and consistency.

Genetic Alliance UK has submitted a join response with the Academy of Medical Sciences, Arthritis Research UK, Association of Medical Research Charities, British Heart Foundation, Cancer Research UK, Economic and Social Research Council, Medical Research Council, Pelican Cancer Foundation and the Wellcome Trust.

In this response we have highlighted the need for the patient community to be represented within IGARD, as well as pointing to some areas of governance which are currently lacking clarity.