Current consultations

National Cancer Research Institute (NCRI) published template for access policy development
Open draft for consultation

The NCRI have created a Samples and Data for Research: Template for Access Policy Development. The aim is to provide a practical instrument which (i) reflects established good practice principles, (ii) can be tailored to particular circumstances, and (iii) helps avoid unnecessary duplication of effort. This version of the document is published as an open draft for consultation and will be updated based on comments received. If you have any comments or suggestions for improving the document please email them to access@ncri.org.uk.

Summary of Responses to the Consultation on the Additional Uses of Patient Data

The Department of Health undertook a consultation on patient consent and confidentiality in relation to using patient information for research at the end of 2008. The report of that consultation has now been published on the DH website. The DH website states: "It is clear that the public expects their consent to be sought if the data used is identifiable. This means we need to test out how best to secure that consent and properly inform patients about the use of their identifiable medical records. We intend to set up a number of pilots in Hampshire, the Isle of Wight, Birmingham and Nottingham which will explore means of patients opting out of having their records viewed for research purposes. We will report back on testing and offer a preferred mechanism by June 2010.”

Responses to NIGB Consultation on Guidance on Requesting Amendments to Health and Social Care Records

The NIGB have now published guidance on requesting amendments to health and social care records. This includes a section on records used for secondary uses which includes research.

EU Directive consultation response

The UK response to the European Commission’s consultation on the Clinical Trials Directive that has been submitted by the MHRA.

Last updated: 22 February 2010