The burdensome logistics of data linkage in Australia – the example of a national registry for congenital heart disease

Larissa K. Lloyd; Calum Nicholson; Geoff Strange; David S. Celermajer

doi:10.1071/AH23185

RESEARCH ARTICLE (Open Access)

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The burdensome logistics of data linkage in Australia – the example of a national registry for congenital heart disease

Larissa K. Lloyd

^A ^B ^C , Calum Nicholson ^A ^B ^C , Geoff Strange ^A ^B ^C and David S. Celermajer ^A ^B ^C ^*

+ Author Affiliations

- Author Affiliations

^A Clinical Research Group, Heart Research Institute, Sydney, NSW, Australia.

^B Cardiology Department, Royal Prince Alfred Hospital, Level 6, Building 75, Missenden Road, Camperdown, Sydney, NSW 2050, Australia.

^C Faculty of Medicine, The University of Sydney, Sydney, NSW, Australia.

^* Correspondence to: david.celermajer@health.nsw.gov.au

Australian Health Review 48(1) 8-15 https://doi.org/10.1071/AH23185

Submitted: 13 September 2023 Accepted: 21 November 2023 Published: 21 December 2023

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of AHHA. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Objective

Data linkage is a very powerful research tool in epidemiology, however, establishing this can be a lengthy and intensive process. This paper reports on the complex landscape of conducting data linkage projects in Australia.

Methods

We reviewed the processes, required documentation, and applications required to conduct multi-jurisdictional data linkage across Australia, in 2023.

Results

Obtaining the necessary approvals to conduct linkage will likely take nearly 2 years (estimated 730 days, including 605 days from initial submission to obtaining all ethical approvals and an estimated further 125 days for the issuance of unexpected additionally required approvals). Ethical review for linkage projects ranged from 51 to 128 days from submission to ethical approval, and applications consisted of 9–25 documents.

Conclusions

Major obstacles to conducting multi-jurisdictional data linkage included the complexity of the process, and substantial time and financial costs. The process was characterised by inefficiencies at several levels, reduplication, and a lack of any key accountabilities for timely performance of processes. Data linkage is an invaluable resource for epidemiological research. Further streamlining, establishing accountability, and greater collaboration between jurisdictions is needed to ensure data linkage is both accessible and feasible to researchers.

Keywords: congenital heart disease, data linkage, epidemiology, ethics, population health, registry.

References

1 Hobbs MS, McCall MG. Health statistics and record linkage in Australia. J Chronic Dis 1970; 23(5): 375-81.
| Crossref | Google Scholar | PubMed |

2 Brook EL, Rosman DL, Holman CD. Public good through data linkage: measuring research outputs from the Western Australian Data Linkage System. Aust N Z J Public Health 2008; 32(1): 19-23.
| Crossref | Google Scholar | PubMed |

3 Hall SE, Holman CD, Finn J, Semmens JB. Improving the evidence base for promoting quality and equity of surgical care using population-based linkage of administrative health records. Int J Qual Health Care 2005; 17(5): 415-20.
| Crossref | Google Scholar | PubMed |

4 Sibthorpe B, Kliewer E, Smith L. Record linkage in Australian epidemiological research: health benefits, privacy safeguards and future potential. Aust J Public Health 1995; 19(3): 250-6.
| Crossref | Google Scholar | PubMed |

5 Bohensky MA, Jolley D, Sundararajan V, Evans S, Pilcher DV, Scott I, et al. Data linkage: a powerful research tool with potential problems. BMC Health Serv Res 2010; 10: 346.
| Crossref | Google Scholar | PubMed |

6 Holman CD, Bass AJ, Rouse IL, Hobbs MS. Population-based linkage of health records in Western Australia: development of a health services research linked database. Aust N Z J Public Health 1999; 23(5): 453-9.
| Crossref | Google Scholar | PubMed |

7 Young A, Flack F. Recent trends in the use of linked data in Australia. Aust Health Rev 2018; 42(5): 584-90.
| Crossref | Google Scholar | PubMed |

8 Tew M, Dalziel KM, Petrie DJ, Clarke PM. Growth of linked hospital data use in Australia: a systematic review. Aust Health Rev 2017; 41(4): 394-400.
| Crossref | Google Scholar | PubMed |

9 Dinh NTT, Cox IA, de Graaff B, Campbell JA, Stokes B, Palmer AJ. A Comprehensive Systematic Review of Data Linkage Publications on Diabetes in Australia. Front Public Health 2022; 10: 757987.
| Crossref | Google Scholar | PubMed |

10 Australian Government, Department of Education. National Collaborative Research Infrastructure Strategy Strategic Roadmap 2006. Australian Government; 2006. Available at https://www.education.gov.au/national-research-infrastructure/resources/national-collaborative-research-infrastructure-strategy-strategic-roadmap-2006

11 Boyd JH, Ferrante AM, O’Keefe CM, Bass AJ, Randall SM, Semmens JB. Data linkage infrastructure for cross-jurisdictional health-related research in Australia. BMC Health Serv Res 2012; 12: 480.
| Crossref | Google Scholar | PubMed |

12 Tervonen HE, Purdie S, Creighton N. Using data linkage to enhance the reporting of cancer outcomes of Aboriginal and Torres Strait Islander people in NSW, Australia. BMC Med Res Methodol 2019; 19(1): 245.
| Crossref | Google Scholar | PubMed |

13 Celermajer D, Strange G, Cordina R, Selbie L, Sholler G, Winlaw D, et al. Congenital Heart Disease Requires a Lifetime Continuum of Care: A Call for a Regional Registry. Heart Lung Circ 2016; 25(8): 750-4.
| Crossref | Google Scholar | PubMed |

14 Lloyd LK, Nasir R, Nicholson C, Strange G, Celermajer DS. Obstacles in establishing a national disease registry in Australia: lessons from the development of the CHAANZ Congenital Heart Disease Registry. Aust Health Rev 2023; 47: 410-7.
| Crossref | Google Scholar | PubMed |

15 Andrew NE, Sundararajan V, Thrift AG, Kilkenny MF, Katzenellenbogen J, Flack F, et al. Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data. Aust N Z J Public Health 2016; 40(5): 436-42.
| Crossref | Google Scholar | PubMed |

16 Smith M, Flack F. Data Linkage in Australia: The First 50 Years. Int J Environ Res Public Health 2021; 18(21):.
| Crossref | Google Scholar | PubMed |

17 Palamuthusingam D, Johnson DW, Hawley C, Pascoe E, Fahim M. Health data linkage research in Australia remains challenging. Intern Med J 2019; 49(4): 539-44.
| Crossref | Google Scholar | PubMed |

18 Smit J-A, van der Graaf R, Mostert M, Vaartjes I, Zuidgeest M, Grobbee D, et al. Overcoming ethical and legal obstacles to data linkage in health research: stakeholder perspectives. Int J Popul Data Sci 2023; 8(1):.
| Crossref | Google Scholar |

19 Mitchell RJ, Cameron CM, McClure RJ, Williamson AM. Data linkage capabilities in Australia: practical issues identified by a Population Health Research Network ‘Proof of Concept project’. Aust N Z J Public Health 2015; 39(4): 319-25.
| Crossref | Google Scholar | PubMed |

20 Productivity Commission. Data Availability and Use. Report No. 82. Canberra: Productivity Commission; 2017. Available at https://www.pc.gov.au/inquiries/completed/data-access/report/data-access-overview.pdf

21 Australian Research Data Commons. Linked Data Asset for Australian Health Research. NCRIS; 2022. Available at ardc.edu.au/project/linked-data-asset-australian-health-research/

22 Australian Institute of Health and Welfare. AIHW linked data assets. 2023. Available at https://www.aihw.gov.au/about-our-data/linked-data-assets