Nadine E Andrew1, Vijaya Sundararajan2, Amanda G Thrift3, Monique F Kilkenny3,4, Judith Katzenellenbogen5,6, Felicity Flack6, Melina Gattellari7,8, James H Boyd9, Phil Anderson10,11, Brenda Grabsch4, Natasha A Lannin12, Trisha Johnston13, Ying Chen14, Dominique A Cadilhac3,4. 1. Stroke & Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Victoria. nadine.andrew@monash.edu. 2. Department of Medicine, St. Vincent's Hospital, Melbourne University, Victoria. 3. Stroke & Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Victoria. 4. Florey Institute of Neuroscience and Mental Health, Heidelberg, Victoria. 5. Western Australian Centre for Rural Health, The University of Western Australia. 6. Telethon Kids Institute, The University of Western Australia. 7. South Western Sydney Clinical School, University of New South Wales. 8. Ingham Institute for Applied Medical Research, New South Wales. 9. Population Health Research Network Centre for Data Linkage, Centre for Population Health Research, Curtin University, Western Australia. 10. Data Linkage Unit, Australian Institute of Health and Welfare, Australian Capital Territory. 11. Faculty of Health, University of Canberra, Australian Capital Territory. 12. School of Allied Health, College of Science, Health and Engineering, La Trobe University, Victoria. 13. Health Statistics Branch, Queensland Department of Health. 14. Victorian Data Linkages, Department of Health and Human Services, Victoria.
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.
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.
Authors: Amminadab L Eliakundu; Dominique A Cadilhac; Joosup Kim; Monique F Kilkenny; Kathleen L Bagot; Emily Andrew; Shelley Cox; Christopher F Bladin; Michael Stephenson; Lauren Pesavento; Lauren Sanders; Ben Clissold; Henry Ma; Karen Smith Journal: J Am Coll Emerg Physicians Open Date: 2022-07-01
Authors: Tharshanah Thayabaranathan; Nadine E Andrew; Monique F Kilkenny; Rene Stolwyk; Amanda G Thrift; Rohan Grimley; Trisha Johnston; Vijaya Sundararajan; Natasha A Lannin; Dominique A Cadilhac Journal: Qual Life Res Date: 2018-08-04 Impact factor: 4.147
Authors: Judith M Katzenellenbogen; Daniela Bond-Smith; Rebecca J Seth; Karen Dempsey; Jeffrey Cannon; Lee Nedkoff; Frank M Sanfilippo; Nicholas de Klerk; Joe Hung; Elizabeth Geelhoed; Daniel Williamson; Rosemary Wyber; Anna P Ralph; Dawn Bessarab Journal: Clin Epidemiol Date: 2019-11-15 Impact factor: 4.790
Authors: N E Andrew; J Kim; D A Cadilhac; V Sundararajan; A G Thrift; L Churilov; N A Lannin; M Nelson; V Srikanth; M F Kilkenny Journal: Int J Popul Data Sci Date: 2019-08-05
Authors: Karen Susan Tingay; Amrita Bandyopadhyay; Lucy Griffiths; Ashley Akbari; Sinead Brophy; Helen Bedford; Mario Cortina-Borja; Efrosini Setakis; Suzann Walton; Emla Fitzsimons; Carol Dezateux; Ronan A Lyons Journal: Int J Popul Data Sci Date: 2019-04-02
Authors: Jiao Song; Elizabeth Elliot; Andrew D Morris; Joannes J Kerssens; Ashley Akbari; Simon Ellwood-Thompson; Ronan A Lyons Journal: Int J Popul Data Sci Date: 2018-09-21