Addressing the challenges of cross‐jurisdictional data linkage between a national clinical quality registry and government‐held health data
Abstract Objective: To describe the challenges of obtaining state and nationally held data for linkage to a non‐government national clinical registry. Methods: We reviewed processes negotiated to achieve linkage between the Australian Stroke Clinical Registry (AuSCR), the National Death Index, and s...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2016-10-01
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| Series: | Australian and New Zealand Journal of Public Health |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/1753-6405.12576 |
| _version_ | 1797700844198559744 |
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| author | Nadine E. Andrew Vijaya Sundararajan Amanda G. Thrift Monique F. Kilkenny Judith Katzenellenbogen Felicity Flack Melina Gattellari James H. Boyd Phil Anderson Brenda Grabsch Natasha A. Lannin Trisha Johnston Ying Chen Dominique A. Cadilhac |
| author_facet | Nadine E. Andrew Vijaya Sundararajan Amanda G. Thrift Monique F. Kilkenny Judith Katzenellenbogen Felicity Flack Melina Gattellari James H. Boyd Phil Anderson Brenda Grabsch Natasha A. Lannin Trisha Johnston Ying Chen Dominique A. Cadilhac |
| author_sort | Nadine E. Andrew |
| collection | DOAJ |
| description | Abstract Objective: To describe the challenges of obtaining state and nationally held data for linkage to a non‐government national clinical registry. Methods: We reviewed processes negotiated to achieve linkage between the Australian Stroke Clinical Registry (AuSCR), the National Death Index, and state held hospital data. Minutes from working group meetings, national workshop meetings, and documented communications with health department staff were reviewed and summarised. Results: Time from first application to receipt of data was more than two years for most state data‐sets. Several challenges were unique to linkages involving identifiable data from a non‐government clinical registry. Concerns about consent, the re‐identification of data, duality of data custodian roles and data ownership were raised. Requirements involved the development of data flow methods, separating roles and multiple governance and ethics approvals. Approval to link death data presented the fewest barriers. Conclusion: To our knowledge, this is the first time in Australia that person‐level data from a clinical quality registry has been linked to hospital and mortality data across multiple Australian jurisdictions. Implications for Public Health: The administrative load of obtaining linked data makes projects such as this burdensome but not impossible. An improved national centralised strategy for data linkage in Australia is urgently needed. |
| first_indexed | 2024-03-12T04:27:25Z |
| format | Article |
| id | doaj.art-fde50b5790e94e60920118618dc5434b |
| institution | Directory Open Access Journal |
| issn | 1326-0200 1753-6405 |
| language | English |
| last_indexed | 2024-03-12T04:27:25Z |
| publishDate | 2016-10-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Australian and New Zealand Journal of Public Health |
| spelling | doaj.art-fde50b5790e94e60920118618dc5434b2023-09-03T10:15:44ZengElsevierAustralian and New Zealand Journal of Public Health1326-02001753-64052016-10-0140543644210.1111/1753-6405.12576Addressing the challenges of cross‐jurisdictional data linkage between a national clinical quality registry and government‐held health dataNadine E. Andrew0Vijaya Sundararajan1Amanda G. Thrift2Monique F. Kilkenny3Judith Katzenellenbogen4Felicity Flack5Melina Gattellari6James H. Boyd7Phil Anderson8Brenda Grabsch9Natasha A. Lannin10Trisha Johnston11Ying Chen12Dominique A. Cadilhac13Stroke & Ageing Research, School of Clinical Sciences at Monash Health Monash University VictoriaDepartment of Medicine, St. Vincent's Hospital Melbourne University VictoriaStroke & Ageing Research, School of Clinical Sciences at Monash Health Monash University VictoriaStroke & Ageing Research, School of Clinical Sciences at Monash Health Monash University VictoriaWestern Australian Centre for Rural Health The University of Western AustraliaTelethon Kids Institute The University of Western AustraliaSouth Western Sydney Clinical School University of New South WalesPopulation Health Research Network Centre for Data Linkage, Centre for Population Health Research Curtin University Western AustraliaData Linkage Unit, Australian Institute of Health and Welfare Australian Capital TerritoryFlorey Institute of Neuroscience and Mental Health Heidelberg VictoriaSchool of Allied Health, College of Science, Health and Engineering La Trobe University VictoriaHealth Statistics Branch Queensland Department of HealthVictorian Data Linkages Department of Health and Human Services VictoriaStroke & Ageing Research, School of Clinical Sciences at Monash Health Monash University VictoriaAbstract Objective: To describe the challenges of obtaining state and nationally held data for linkage to a non‐government national clinical registry. Methods: We reviewed processes negotiated to achieve linkage between the Australian Stroke Clinical Registry (AuSCR), the National Death Index, and state held hospital data. Minutes from working group meetings, national workshop meetings, and documented communications with health department staff were reviewed and summarised. Results: Time from first application to receipt of data was more than two years for most state data‐sets. Several challenges were unique to linkages involving identifiable data from a non‐government clinical registry. Concerns about consent, the re‐identification of data, duality of data custodian roles and data ownership were raised. Requirements involved the development of data flow methods, separating roles and multiple governance and ethics approvals. Approval to link death data presented the fewest barriers. Conclusion: To our knowledge, this is the first time in Australia that person‐level data from a clinical quality registry has been linked to hospital and mortality data across multiple Australian jurisdictions. Implications for Public Health: The administrative load of obtaining linked data makes projects such as this burdensome but not impossible. An improved national centralised strategy for data linkage in Australia is urgently needed.https://doi.org/10.1111/1753-6405.12576data linkageclinical registryhealth data |
| spellingShingle | Nadine E. Andrew Vijaya Sundararajan Amanda G. Thrift Monique F. Kilkenny Judith Katzenellenbogen Felicity Flack Melina Gattellari James H. Boyd Phil Anderson Brenda Grabsch Natasha A. Lannin Trisha Johnston Ying Chen Dominique A. Cadilhac Addressing the challenges of cross‐jurisdictional data linkage between a national clinical quality registry and government‐held health data Australian and New Zealand Journal of Public Health data linkage clinical registry health data |
| title | Addressing the challenges of cross‐jurisdictional data linkage between a national clinical quality registry and government‐held health data |
| title_full | Addressing the challenges of cross‐jurisdictional data linkage between a national clinical quality registry and government‐held health data |
| title_fullStr | Addressing the challenges of cross‐jurisdictional data linkage between a national clinical quality registry and government‐held health data |
| title_full_unstemmed | Addressing the challenges of cross‐jurisdictional data linkage between a national clinical quality registry and government‐held health data |
| title_short | Addressing the challenges of cross‐jurisdictional data linkage between a national clinical quality registry and government‐held health data |
| title_sort | addressing the challenges of cross jurisdictional data linkage between a national clinical quality registry and government held health data |
| topic | data linkage clinical registry health data |
| url | https://doi.org/10.1111/1753-6405.12576 |
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