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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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