Patient and Public Involvement
The Research Capability Programme (RCP) is embedding Patient and Public Involvement (PPI) in all aspects of the programme. This will ensure that a patient-centred approach to health research is taken while maintaining and protecting patient data.
The Research Capability Programme welcomes the involvement of lay people in high-level, strategic decision-making and has PPI representation on its Board.
Patient feedback from the pilot HRSS will be invaluable for the development of future communications with patients and the public
A patient and public involvement coordination group is being set up to:
- Identify and measure benefits of the pilot HRSS
- Provide feedback and reporting on the pilot HRSS and useful lessons learned that will inform the development of the main Health Research Support Service
- Raise awareness of why patient and public involvement is being done in the pilot HRSS, the value it adds and the wider benefits to patients and the public
To learn more about how you can be involved with the pilot HRSS PPI coordination group please click here
Consultation on the wider use of patient information
The Health Research Support Service (HRSS) pilot programme is taking forward the findings of the Department of Health public consultation into the additional uses of patient data. The consultation ran from Wednesday 17th September to Friday 12th December 2008, and respondents included patients and public, researchers and representatives from the NHS, social care, medical charities and ethics bodies.
To view the full report please click here
To view support documents for the consultation please click here.
Data Sharing Review
The Data Sharing Review was published on 11 July 2008 by Richard Thomas (the Information Commissioner) and Mark Walport (Director of the Wellcome Trust).
This provided a 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 are created for approving and accrediting researchers who are allowed to work in such environments
- Academic and other partners are involved in safe havens
- Systems are developed that allow researchers to identify potential participants who may then be approached to take part in clinical studies for which consent is needed.