Steps towards measuring Equity in Testing Dr Mark Kroese UKGTN Public Health Advisor UK Genetic Testing Network Conference 22 nd November 2012

Background UKGTN Steering Group approved proposal to request specified molecular genetic test activity from member laboratories and to analyse activity at population level. The distributions of rare genetic diseases and low volume tests are expected to vary for valid reasons between geographical areas and different populations. Aggregating all the molecular genetic test activity-an assumption can be made that all areas should within certain limits have a similar level of overall genetic test provision if there is provision based on clinical need.

Background A national understanding of genetic test provision Routine collection of robust data -ability to investigate trends in activity and gather further information on demographic and clinical variables. Information to inform the commissioning of molecular genetic services from UKGTN member laboratories, both at local and national levels. Improve access to molecular genetic testing for patients

Background Unit of activity is the genetic test report and for each genetic test report - the resident unit postcode or NHS number required. Rates of molecular genetic test activity can be generated for defined populations resident in geographical areas. Pilot completed for data – reviewed by UKGTN Steering Group in 2011 and further development supported.

Molecular genetic test rates report 2012 LHO commissioned to provide database and analytical support for review of activity , and Key findings  modest improvement in the quality of the reporting of valid resident postcodes over time  the variations have declined since the data collection commenced, a difference between SHAs of about 1.5 times in the test rate per 100,000 population  the differentials between Primary Care Trusts (PCTs) were about 4 times in the test rate per 100,000 population  further work is required to ensure the data quality is of a sufficient standard for the results to be used for direct commissioning purposes

Results include Assessment of data quality SHA and NHS cluster rates PCT rates within SHA Rates for breast cancer, Huntington Disease and Fragile X Presentation of rates in maps Laboratory specific report UKGTN CSAG endorsed report and all member laboratories have received report and the results.

Data issues A significant proportion (8.5% in and 7.7% in ) of the records submitted did not include a valid postcode Four laboratories (of 27) unable to provide data Unclear what the proportion of the total activity data was submitted

Analysis for 2011/12 data – new items Age standardized rates to be calculated using date of birth Age standardized rates for requests by clinical genetics and other specialties separately Analysis using new commissioning boundaries and populations for England (CCGs and NHSCB) Re-analysis to provide trend data from 09/10 and 10/11 for new populations Specific NHSCB specialised commissioner reports NHS number conversion to postcode in place

Key challenges Some laboratories remain unable to submit data due to laboratory IT limitations. Some laboratories unable to provide valid postcodes or NHS numbers for a significant proportion of their molecular genetic test activity due to ordering process and laboratory IT limitations. For a number of laboratories, the task of data collation and submission is a laborious task due to laboratory IT limitations. The new NHS commissioning structures in England will require information that is sufficiently robust to be used for direct commissioning purposes.

Acknowledgements UKGTN Member laboratories UKGTN Laboratory Membership and Audit Working Group (LMA) Ms J Deller London Health Observatory

“Better quality information and sharing information is critical to modernising the NHS and care services. Information can be used to: improve the quality of care; improve our health and care outcomes; reduce inequalities; and increase productivity and efficiency. “ DH, The Power of Information, 2012