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Steps towards measuring Equity in Testing

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

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Steps towards measuring Equity in Testing

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

  2. Background • 2006 - 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.

  3. 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

  4. 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 2007-2008 data – reviewed by UKGTN Steering Group in 2011 and further development supported.

  5. Molecular genetic test rates report 2012 • LHO commissioned to provide database and analytical support for review of activity- 2008-2009, 2009-2010 and 2010-2011 • 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

  6. 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.

  7. Data issues • A significant proportion (8.5% in 2009-10 and 7.7% in 2010-11) 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

  8. 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

  9. 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.

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

  11. “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

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