The consultation with the public and healthcare professionals on the use of patient information for purposes such as health research and managing and planning care is now published. Read more about the Summary of Responses to the Consultation on the Additional Uses of Patient Data.

View the questionnaire:

The original questionnaire can be accessed in the following formats:

• Microsoft Word (Word 408Kb)
• PDF (PDF 120Kb)

Please find the following support information available too:

• Full stakeholder list, (PDF 84Kb).
• Background information.
• Glossary.
• Anonymised Pam's record, (PDF 22Kb).
• Linked Anonymised Pam's record, (PDF 22Kb).
• Identifiable Pam's record, (PDF 22Kb).
• VAn Invitation to a attend a Workshop, (DOC 149Kb).

Data Sharing Review

We acknowledge the importance of the consultation and report by Richard Thomas (the Information Commissioner) and Mark Walport (Director of the Wellcome Trust) in their Data Sharing Review, commissioned by the Prime Minister and published on 11 July 2008.

This provides a timely, insightful and detailed examination of the extent and purposes for which Government should use personal information about citizens, and how limits on these should be set.

A series of specific recommendations to Government are included. Amongst these, Recommendations 15, 16 and 17 set out proposals, which this public consultation supports, regarding the management and use of data for research and statistical analysis purposes.

These include specific recommendations concerning "Safe Havens" for population-based research in which the protection of confidentiality is paramount; systems of approving and accrediting researchers who are allowed to work in such environments; the involvement of academic and other partners in safe havens; and the development of systems to allow researchers to identify potential participants, who may then be approached to take part in clinical studies for which consent is needed.