Site Specific Clinical Reference Groups
Work in 2008/09 saw the definition and agreement of the roles of the new NCIN Site Specific Clinical Reference Groups (SSCRGs), and the appointment of the interim chairs to all these groups. These chairs met for an initial briefing and to discuss their roles in December 2008, and the groups were launched on 11th March 2009 at a workshop in London.
For their disease group, each SSCRG is expected to:
- Identify and prioritise clinical outcome measures.
- Identify key variables which contribute to achieving high standards relating to these outcomes.
- Establish what is already known about the disease group within the UK and international variation in outcomes.
- Support the definition of a core data set.
- Advise on what relevant audit and research activity is currently being undertaken, within the UK and internationally.
- Promote the linkage of relevant sources of data.
- Advise the NCIN on priorities for national analyses.
- Advise on minimum standards of data completeness and quality for the relevant dataset(s).
- Support commissioning and the implementation of Improving Outcomes and other national guidance.
- Build links with the relevant NCRI Clinical Study Groups and other appropriate NCRI initiatives.
- Promote clinical and voluntary sector engagement in all elements of the work of the NCIN.
- Take every opportunity to promote the aims of the NCIN within their specialist field.
- Assist in the writing, editing and interpretation of relevant site-specific NCIN reports.
- Advise the NCIN on the handling of publications containing data naming specific institutions or clinicians.
- Support service improvement initiatives to achieve improved patient outcomes.
- Help identify ways in which the public could be better informed about the quality of services available to enable informed choices.
Download the full SSCRG Terms of Reference.
Initial work undertaken by each lead registry has provided a site-specific "baseline assessment". The support of the SSCRGs will be crucial, and the role of the lead cancer registry is an important and developmental one. Further work will be needed during 2009/10 to help registries develop this role, working closely through the relevant SSCRG.
The SSCRG and lead registries will be required to interact with other agencies; the SSCRG will be empowered and encouraged to work with other specialist agencies where these exist, including research groups, charities and public health groups.
Key areas for 2009/10 are:
- Foster the development of the role of the SSCRGs
- Define the key priority areas for analysis, and commence work
- Develop the role of the lead registries
- Formalise the detailed lead registry function
- Agree engagement policies with other agencies
