In order for NHS England to formally consider a new or revised service specification, a number of associated reports and processes need to be completed. The Complex Gynaecological Services Clinical Reference Group (CRG) did start the process of developing a new service specification for ovarian cancer, however, this did not progress through the process. This was due to technical difficulties encountered during the Impact Assessment stage and included issues in identifying activity and the associated financial impact.

In the subsequent period, CRGs have been restructured and the responsibility for this clinical area now resides with the Specialised Cancer Surgery CRG, within the National Cancer Programme of Care. In addition, NHS England has also published a revised process for service specification development (titled: ‘Methods’), which can be found at:

https://www.england.nhs.uk/commissioning/spec-services/key-docs/

The Methods sets out the process for completing service specification work and, in accordance with this process, the Specialised Cancer Surgery CRG has been asked to consider progressing this work. The CRG Chair is due to discuss the matter with a representative of the Gynaecology CRG later this week and, following this, it is expected that the first step of the process will be completed by the middle of March 2017.

The Department’s Policy Research Unit on Cancer Awareness Screening and Early Diagnosis has undertaken a qualitative research study in which members of the public were given access to available leaflets on ovarian cancer awareness and then participated in six focus groups and interviews on their acceptability and how they would be received and understood if included within the all clear screening results letter from the breast or cervical screening programme. This study is now complete and is being prepared for peer-reviewed publication. A further qualitative research study with professionals will commence when approval is received from the Health Research Authority.

A second project is a synthesis of published incidence, mortality, stage distribution and stage-specific survival rates for ovarian cancer by age. The aim of this project is to identify which age group would be most likely to benefit from such an intervention, in terms of risk of ovarian cancer and room for improvement in stage at diagnosis. This project is also complete and is being prepared for peer-reviewed publication.

The Department’s Policy Research Unit on Cancer Awareness Screening and Early Diagnosis has undertaken a qualitative research study in which members of the public were given access to available leaflets on ovarian cancer awareness and then participated in six focus groups and interviews on their acceptability and how they would be received and understood if included within the all clear screening results letter from the breast or cervical screening programme. This study is now complete and is being prepared for peer-reviewed publication. A further qualitative research study with professionals will commence when approval is received from the Health Research Authority.

A second project is a synthesis of published incidence, mortality, stage distribution and stage-specific survival rates for ovarian cancer by age. The aim of this project is to identify which age group would be most likely to benefit from such an intervention, in terms of risk of ovarian cancer and room for improvement in stage at diagnosis. This project is also complete and is being prepared for peer-reviewed publication.

In July 2015, NHS England published a clinical commissioning policy to guide and expand access to BRCA testing based on updated guidelines issued by the National Institute for Health and Care Excellence (NICE). The Clinical Commissioning Policy: Genetic Testing for BRCA 1 and BRCA 2 mutation, offers genetic testing to people with a 10% risk of carrying a BRCA mutation compared to the previously published 20% risk of carrying.

The recording of disease specific information is usually recorded in the patient notes and on the test request form, rather than in genetic centres, and in some cases may be recorded on the patient management database at an individual testing centre but is not aggregated up into disease specific data sets.

Data collection for BRCA 1 and 2 stopped in 2013 with the introduction of the Social Care Act and the restrictions on the collection and processing of personable identifiable data, however, NHS Digital (previously the Health and Social Care Information Centre) is now authorised to resume data collection on behalf of the UK Genetic Testing Network (UKGTN) for England. Data collection took place between June and July 2016 respectively for 2014/15 and 2015/16. The report is due to be available to UKGTN at the end of March 2017.

However, NHS England will explore data collection on testing for lynch syndrome with UKGTN as part of their work to look at options for implementation of Recommendation 36 of the independent Cancer Taskforce report.

In July 2015, NHS England published a clinical commissioning policy to guide and expand access to BRCA testing based on updated guidelines issued by the National Institute for Health and Care Excellence (NICE). The Clinical Commissioning Policy: Genetic Testing for BRCA 1 and BRCA 2 mutation, offers genetic testing to people with a 10% risk of carrying a BRCA mutation compared to the previously published 20% risk of carrying.

The recording of disease specific information is usually recorded in the patient notes and on the test request form, rather than in genetic centres, and in some cases may be recorded on the patient management database at an individual testing centre but is not aggregated up into disease specific data sets.

Data collection for BRCA 1 and 2 stopped in 2013 with the introduction of the Social Care Act and the restrictions on the collection and processing of personable identifiable data, however, NHS Digital (previously the Health and Social Care Information Centre) is now authorised to resume data collection on behalf of the UK Genetic Testing Network (UKGTN) for England. Data collection took place between June and July 2016 respectively for 2014/15 and 2015/16. The report is due to be available to UKGTN at the end of March 2017.

However, NHS England will explore data collection on testing for lynch syndrome with UKGTN as part of their work to look at options for implementation of Recommendation 36 of the independent Cancer Taskforce report.

In July 2015, NHS England published a clinical commissioning policy to guide and expand access to BRCA testing based on updated guidelines issued by the National Institute for Health and Care Excellence (NICE). The Clinical Commissioning Policy: Genetic Testing for BRCA 1 and BRCA 2 mutation, offers genetic testing to people with a 10% risk of carrying a BRCA mutation compared to the previously published 20% risk of carrying.

The recording of disease specific information is usually recorded in the patient notes and on the test request form, rather than in genetic centres, and in some cases may be recorded on the patient management database at an individual testing centre but is not aggregated up into disease specific data sets.

Data collection for BRCA 1 and 2 stopped in 2013 with the introduction of the Social Care Act and the restrictions on the collection and processing of personable identifiable data, however, NHS Digital (previously the Health and Social Care Information Centre) is now authorised to resume data collection on behalf of the UK Genetic Testing Network (UKGTN) for England. Data collection took place between June and July 2016 respectively for 2014/15 and 2015/16. The report is due to be available to UKGTN at the end of March 2017.

However, NHS England will explore data collection on testing for lynch syndrome with UKGTN as part of their work to look at options for implementation of Recommendation 36 of the independent Cancer Taskforce report.

The Department and Public Health England are aware that there is research in this area to consider and are keeping abreast with developments.

In July 2015, NHS England published a clinical commissioning policy to guide and expand access to BRCA testing based on updated guidelines issued by the National Institute for Health and Care Excellence (NICE). The Clinical Commissioning Policy: Genetic Testing for BRCA 1 and BRCA 2 mutation, offers genetic testing to people with a 10% risk of carrying a BRCA mutation compared to the previously published 20% risk of carrying.

The recording of disease specific information is usually recorded in the patient notes and on the test request form, rather than in genetic centres, and in some cases may be recorded on the patient management database at an individual testing centre but is not aggregated up into disease specific data sets.

Data collection for BRCA 1 and 2 stopped in 2013 with the introduction of the Social Care Act and the restrictions on the collection and processing of personable identifiable data, however, NHS Digital (previously the Health and Social Care Information Centre) is now authorised to resume data collection on behalf of the UK Genetic Testing Network (UKGTN) for England. Data collection took place between June and July 2016 respectively for 2014/15 and 2015/16. The report is due to be available to UKGTN at the end of March 2017.

However, NHS England will explore data collection on testing for lynch syndrome with UKGTN as part of their work to look at options for implementation of Recommendation 36 of the independent Cancer Taskforce report.