On 17 September 2008, NHS Connecting for Health launched a consultation, with the public and healthcare professionals, on the use of patient information for purposes such as provision of care and treatment, research, auditing the quality and safety of care, management planning, etc.
NHS Connecting for Health would like to obtain the views of the general public, patients and other interested parties on how patient information should be used for additional purposes, for example, research.
This consultation is launched in the wake of the report, Data Sharing Review, prepared by Richard Thomas (the Information Commissioner) and Dr Mark Walport (Director of the Wellcome Trust) which was commissioned by the Prime Minister and published on 11 July 2008. The report makes a series of recommendations which are aimed at transforming the personal and organisational culture of those who manage, collate and share information including a series of specific recommendations for the Government. These include recommendations regarding the management and use of data for research and statistical analysis purposes.
The consultation asks:
- Who should have access to patient data?
- For what purposes should data be used other than direct care (additional uses)?
- What process should govern access when individual patients can or cannot be identified?
- Who should control and manage access to the information?
- What consent options and safeguards should there be for patients?
- What concerns do people have about secondary uses and how can they best be addressed?
NHS Connecting for Health will be gathering views from the general public, patients, and NHS staff, care services, ethics, research and development, researchers and professional bodies. This will be done through a series of workshops being held across England and a survey that can be completed online here, in writing, or on the telephone (07717 881633 or 0161 902 1100). The consultation closes on 12 December 2008.