Realising opportunities for evidence-based cancer service delivery and research: linking cancer registry and administrative data in Australia
The traditional roles of Australian cancer registries have been incidence, mortality and survival surveillance although increasingly, roles are being broadened to include data support for health‐service management and evaluation. In some Australian jurisdictions, cancer stage and other prognostic da...
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Veröffentlicht in: | European journal of cancer care 2014-11, Vol.23 (6), p.721-727 |
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creator | Roder, D.M. Fong, K.M. Brown, M.P. Zalcberg, J. Wainwright, C.E. |
description | The traditional roles of Australian cancer registries have been incidence, mortality and survival surveillance although increasingly, roles are being broadened to include data support for health‐service management and evaluation. In some Australian jurisdictions, cancer stage and other prognostic data are being included in registry databases and this is being facilitated by an increase in structured pathology reporting by pathology and haematology laboratories. Data linkage facilities are being extended across the country at national and jurisdictional level, facilitating data linkage between registry data and data extracts from administrative databases that include treatment, screening and vaccination data, and self‐reported data from large population cohorts. Well‐established linkage protocols exist to protect privacy. The aim is to gain better data on patterns of care, service outcomes and related performance indicators for health‐service management and population health and health‐services research, at a time of increasing cost pressures. Barriers include wariness among some data custodians towards releasing data and the need for clearance for data release from large numbers of research ethics committees. Progress is being made though, and proof of concept is being established. |
doi_str_mv | 10.1111/ecc.12242 |
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In some Australian jurisdictions, cancer stage and other prognostic data are being included in registry databases and this is being facilitated by an increase in structured pathology reporting by pathology and haematology laboratories. Data linkage facilities are being extended across the country at national and jurisdictional level, facilitating data linkage between registry data and data extracts from administrative databases that include treatment, screening and vaccination data, and self‐reported data from large population cohorts. Well‐established linkage protocols exist to protect privacy. The aim is to gain better data on patterns of care, service outcomes and related performance indicators for health‐service management and population health and health‐services research, at a time of increasing cost pressures. Barriers include wariness among some data custodians towards releasing data and the need for clearance for data release from large numbers of research ethics committees. Progress is being made though, and proof of concept is being established.</description><subject>Australia</subject><subject>Cancer</subject><subject>cancer registries</subject><subject>data access</subject><subject>data linkage</subject><subject>Databases, Factual</subject><subject>Delivery of Health Care - organization & administration</subject><subject>Evidence-Based Medicine</subject><subject>Health Services Research - organization & administration</subject><subject>health-service management</subject><subject>Humans</subject><subject>Medical Record Linkage</subject><subject>Medical research</subject><subject>Neoplasms - therapy</subject><subject>Nursing</subject><subject>privacy</subject><subject>Registries</subject><issn>0961-5423</issn><issn>1365-2354</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNpdkU1v1DAQhi0EotvCgT-ALHHhktZfcRxuVSgtUgUS4uNoTeJJcZt1FjtZ2B_R_4zTXXrAh_GM_byj0byEvOLslOdzhl13yoVQ4glZcanLQshSPSUrVmtelErII3Kc0i1jXPJaPSdHohRK5bAi918QBp98uKHjZjPGaQ5-8phoP0aKW-8wdFi0kNDRDnIeacK49R1Sh4PfYtxRCI5GTAix-_mODj7cLe0OdMQbn6YDBW7tw1LClKXUwQTUB3o-L0-DhxfkWQ9DwpeH-4R8-3Dxtbkqrj9ffmzOr4tO1kIUWpoKGLSmbLUuW1Fzh05o4YSqjcGuEqXmolbSAOt1baRsQbU96zm0jslSnpC3-76bOP6aMU127VOHwwABxzlZrrkxwghmMvrmP_R2nGPI0y1UpZU2TGTq9YGa2zU6u4l-DXFn_y06A2d74LcfcPf4z5ldHLTZQfvgoL1omockK4q9Iu8L_zwqIN5ZXcmqtD8-XVp-9V6Kqqntd_kX_Tmdbw</recordid><startdate>201411</startdate><enddate>201411</enddate><creator>Roder, D.M.</creator><creator>Fong, K.M.</creator><creator>Brown, M.P.</creator><creator>Zalcberg, J.</creator><creator>Wainwright, C.E.</creator><general>Blackwell Publishing Ltd</general><general>Hindawi Limited</general><scope>BSCLL</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>8FD</scope><scope>ASE</scope><scope>FPQ</scope><scope>FR3</scope><scope>K6X</scope><scope>K9.</scope><scope>M7Z</scope><scope>NAPCQ</scope><scope>P64</scope><scope>7X8</scope></search><sort><creationdate>201411</creationdate><title>Realising opportunities for evidence-based cancer service delivery and research: linking cancer registry and administrative data in Australia</title><author>Roder, D.M. ; Fong, K.M. ; Brown, M.P. ; Zalcberg, J. ; Wainwright, C.E.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c3922-6387a0ab85b665b291ded262d24988ec7256129438a0f69833ba4bf0f1abd0353</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Australia</topic><topic>Cancer</topic><topic>cancer registries</topic><topic>data access</topic><topic>data linkage</topic><topic>Databases, Factual</topic><topic>Delivery of Health Care - organization & administration</topic><topic>Evidence-Based Medicine</topic><topic>Health Services Research - organization & administration</topic><topic>health-service management</topic><topic>Humans</topic><topic>Medical Record Linkage</topic><topic>Medical research</topic><topic>Neoplasms - therapy</topic><topic>Nursing</topic><topic>privacy</topic><topic>Registries</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Roder, D.M.</creatorcontrib><creatorcontrib>Fong, K.M.</creatorcontrib><creatorcontrib>Brown, M.P.</creatorcontrib><creatorcontrib>Zalcberg, J.</creatorcontrib><creatorcontrib>Wainwright, C.E.</creatorcontrib><collection>Istex</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>Technology Research Database</collection><collection>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>Engineering Research Database</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Biochemistry Abstracts 1</collection><collection>Nursing & Allied Health Premium</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>European journal of cancer care</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Roder, D.M.</au><au>Fong, K.M.</au><au>Brown, M.P.</au><au>Zalcberg, J.</au><au>Wainwright, C.E.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Realising opportunities for evidence-based cancer service delivery and research: linking cancer registry and administrative data in Australia</atitle><jtitle>European journal of cancer care</jtitle><addtitle>Eur J Cancer Care (Engl)</addtitle><date>2014-11</date><risdate>2014</risdate><volume>23</volume><issue>6</issue><spage>721</spage><epage>727</epage><pages>721-727</pages><issn>0961-5423</issn><eissn>1365-2354</eissn><abstract>The traditional roles of Australian cancer registries have been incidence, mortality and survival surveillance although increasingly, roles are being broadened to include data support for health‐service management and evaluation. In some Australian jurisdictions, cancer stage and other prognostic data are being included in registry databases and this is being facilitated by an increase in structured pathology reporting by pathology and haematology laboratories. Data linkage facilities are being extended across the country at national and jurisdictional level, facilitating data linkage between registry data and data extracts from administrative databases that include treatment, screening and vaccination data, and self‐reported data from large population cohorts. Well‐established linkage protocols exist to protect privacy. The aim is to gain better data on patterns of care, service outcomes and related performance indicators for health‐service management and population health and health‐services research, at a time of increasing cost pressures. Barriers include wariness among some data custodians towards releasing data and the need for clearance for data release from large numbers of research ethics committees. Progress is being made though, and proof of concept is being established.</abstract><cop>England</cop><pub>Blackwell Publishing Ltd</pub><pmid>25244252</pmid><doi>10.1111/ecc.12242</doi><tpages>7</tpages><oa>free_for_read</oa></addata></record> |
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subjects | Australia Cancer cancer registries data access data linkage Databases, Factual Delivery of Health Care - organization & administration Evidence-Based Medicine Health Services Research - organization & administration health-service management Humans Medical Record Linkage Medical research Neoplasms - therapy Nursing privacy Registries |
title | Realising opportunities for evidence-based cancer service delivery and research: linking cancer registry and administrative data in Australia |
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