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Centre for Health Record Linkage (CHeReL)

Centre for Health Record Linkage (CHeReL). Katie Irvine Manager Centre for Health Record Linkage. History in NSW. Demand has outstripped supply In 2005 the Sax Institute commissioned Data Linkage Australia to evaluate the case for a record linkage facility

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Centre for Health Record Linkage (CHeReL)

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  1. Centre for Health Record Linkage (CHeReL) Katie IrvineManager Centre for Health Record Linkage

  2. History in NSW • Demand has outstripped supply • In 2005 the Sax Institute commissioned Data Linkage Australia to evaluate the case for a record linkage facility • recommended establishment of new facility as joint venture between NSW Health and at least two other institutions • recommended a ‘distributed data repository’ design

  3. Centre for Health Record Linkage • Established in 2006 • Nine members • ACT Health • Cancer Institute NSW (the host organisation) • NSW Clinical Excellence Commission • NSW Health • Sax Institute • Universities of Newcastle, Sydney, NSW, Western Sydney • The Cancer Institute NSW is the host organisation

  4. The CHeReL will • create a master linkage key, consisting of ‘pointers’ to records for specific people in health-related data sets • will not contain health information about individuals • provide a mechanism for accessing linked data for: • research • planning of health services • evaluation of health services … for the public benefit

  5. The CHeReL won’t • hold health information other than that required for the record linkage • be a “repository” of linked health data • carry out data analysis or research on linked health data (… it will carry out research on methodological aspects of record linkage)

  6. CHeReL services • Extracts from the Master Linkage Key • NSW Admitted Patient Data Collection • NSW Emergency Department Data Collection • NSW Central Cancer Registry • NSW Pap Test Register • RBDM/ABS death data • RBDM birth registration data • NSW Midwives Data Collection • Perinatal Mortality Data • 45 and Up study • Corresponding datasets for ACT • Linkage of external datasets with MLK extracts • Linkage of other datasets (incl. de-dup)

  7. Current status of MLK Currently 20.6 million records; ~ 6 million keys (people) from 9 datasets, many back to 1994

  8. Approval Process • Two-stage ethical approval • approval for overall governance and operation of CHeReL • approval for individual projects • Approval by the NSW Population and Health Research Ethics Committee • Data custodian approval required at each stage and for each project

  9. Recent Examples • For reporting interval cancers • Identification of possible duplicates • To obtain risk factor, health outcome and health service utilisation data for researchers

  10. Contact Katie Irvine Manager Centre for Health Record Linkage Ph 8374 3515 Email: katie.irvine@cancerinstitute.org.au Website: www.cherel.org.au

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