National Genetics Commissioning Advisory Group (GenCAG)

 The Joint Committee on Medical Genetics was asked to assist in identifying clinical, scientific and academic geneticists who are respected within their relevant communities for their expertise and impartiality, to join the above advisory group. 

Closing date for submission was 5th February 2001.

The Department of Health Board has recently endorsed the recommendation contained in the report of the expert working group on laboratory services for genetics to set up a national Genetics Commissioning Advisory Group (GenCAG) to co-ordinate commissioning of services within a strategic context.  The new group will bring representatives from the eight English RSCGs and the commissioning functions in Scotland, Wales and Northern Ireland together with clinical, scientific and academic geneticists and patient representation.  It will also provide the links to other relevant bodies such as Health Technology Assessment, NICE, the National Screening Committee and horizon scanning. The draft terms of reference for the group are below.

The group is likely to meet four times a year, aiming for a first meeting in March 2001.  The venue will initially be in London but we will consult group members over preferred venues for future meetings.  Members may be asked to volunteer to undertake/contribute to/advise on specific pieces of work between meetings.

The Department of Health is looking to identify senior practitioners with expertise in their specialist area who have the time and interest to become involved in a national programme of work.  They should have an understanding of service organisation issues and the commissioning process.  They must be prepared to work constructively in a multidisciplinary group, and have the ability to stand back and take a dispassionate view of the wider picture.  They will be well respected by their relevant professional community and be perceived to represent their community’s interests (and not just those of their local service).

The Department of Health is seeking to recruit expert members as follows:

 Although expressions of interest are being co-ordinated through the Joint Committee on Medical Genetics, the Department of Health will retain responsibility for final decisions over membership.

National genetics commissioning advisory group

This new group is to be set up as a sub-group of the National Specialist Commissioning Advisory Group to look specifically at genetics services commissioned by Regional Specialised Commissioning Groups.

The proposed definition of genetics services is that developed as part of the ‘Defining specialist services’ project lead by London RSCG.  However where decisions are likely to impact on other services, appropriate links will be made to commissioners responsible.

Draft Terms of Reference

Aim

To take a strategic national overview of genetics services, providing advice to NSCAG and support for RSCGs to ensure that appropriate services are available (within available resources) to NHS patients and their families who require investigation, diagnosis and counselling for conditions with a genetic basis or where genetic technologies underpin service provision, enabling NHS patients and their families to benefit from advances in genetic technologies. 

This aim will be achieved by the following means: 

1. To provide a national strategic steer and co-ordination of commissioning activity for genetics services, with advice to NSCAG and support for RSCGs in commissioning clinical and laboratory genetics services.  Advice on genetic testing to be given within the context of patient pathways of care, with appropriate liaison and networking with relevant commissioners and advisory groups to ensure services in other parts of the pathway are put in place by those responsible.

2. To agree national criteria for assessment and evaluation of genetic tests and technologies.

3. To work closely with NICE and in conjunction with the new ‘knowledge parks’ and the HTA programme to evaluate (or to commission evaluations of) new tests and technologies. Where good supporting evidence exists, to make recommendations for service developments to RSCGs or NSCAG.

4. To predict and monitor the impact of new developments on service delivery, looking to other horizon scanning activities for information.

5. To consider national patterns of clinical and laboratory service provision in genetics and to designate services providers within a national co-ordinated network of genetic testing for:
           (a) rare disorders
           (b) particularly complex tests
           (c) tests with limited NHS access due to commercial licensing

6. To advise on the strategic development of genetic services, co-ordinating access to capital funding for developments.

7. To establish and maintain a clear understanding of existing and planned co-ordinated commissioning arrangements and of any existing marked disparities in service access.

8. To advise where further research is required on service delivery issues.

9. To act as a sounding board and in an advisory capacity to the DH lead director on genetics.

10. To report to NSCAG for endorsement of service designation decisions.