Consultation on the wider use of patient information
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 closed.
The report on the consultation will be published to this website within 12 weeks. If you have any queries please email nhscfh.rcp@nhs.net.
Complete the questionnaire: three choices
You can respond in several ways. Please choose the method that is best for you:
- You can complete our online questionnaire
- You can complete our questionnaire on paper and return to us by freepost. Available in the following formats:
- You can download a email copy of the questionnaire (Word 382Kb), complete it electronically and then email it back to us
Alternatively you can register to receive details about a workshop you could attend to debate your views with others (see page 6 of the 'views' document below).
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.
