Abstract
Background: The Australian Collaboration for Coordinated Enhanced Sentinel Surveillance (ACCESS) was established to monitor national testing and test outcomes for blood-borne viruses (BBVs) and sexually transmissible infections (STIs) in key populations. ACCESS extracts deidentified data from sentinel health services that include general practice, sexual health, and infectious disease clinics, as well as public and private laboratories that conduct a large volume of BBV/STI testing. An important attribute of ACCESS is the ability to accurately link individual-level records within and between the participating sites, as this enables the system to produce reliable epidemiological measures. Objective: The aim of this study was to evaluate the use of GRHANITE software in ACCESS to extract and link deidentified data from participating clinics and laboratories. GRHANITE generates irreversible hashed linkage keys based on patient-identifying data captured in the patient electronic medical records (EMRs) at the site. The algorithms to produce the data linkage keys use probabilistic linkage principles to account for variability and completeness of the underlying patient identifiers, producing up to four linkage key types per EMR. Errors in the linkage process can arise from imperfect or missing identifiers, impacting the system's integrity. Therefore, it is important to evaluate the quality of the linkages created and evaluate the outcome of the linkage for ongoing public health surveillance. Methods: Although ACCESS data are deidentified, we created two gold-standard datasets where the true match status could be confirmed in order to compare against record linkage results arising from different approaches of the GRHANITE Linkage Tool. We reported sensitivity, specificity, and positive and negative predictive values where possible and estimated specificity by comparing a history of HIV and hepatitis C antibody results for linked EMRs. Results: Sensitivity ranged from 96% to 100%, and specificity was 100% when applying the GRHANITE Linkage Tool to a small gold-standard dataset of 3700 clinical medical records. Medical records in this dataset contained a very high level of data completeness by having the name, date of birth, post code, and Medicare number available for use in record linkage. In a larger gold-standard dataset containing 86,538 medical records across clinics and pathology services, with a lower level of data completeness, sensitivity ranged from 94% to 95% and estimated specificity ranged from 91% to 99% in 4 of the 6 different record linkage approaches. Conclusions: This study's findings suggest that the GRHANITE Linkage Tool can be used to link deidentified patient records accurately and can be confidently used for public health surveillance in systems such as ACCESS.
| Original language | English |
|---|---|
| Article number | e16757 |
| Journal | Journal of Medical Internet Research |
| Volume | 22 |
| Issue number | 6 |
| DOIs | |
| Publication status | Published - Jun 2020 |
| Externally published | Yes |
Bibliographical note
Funding Information:ACCESS is a partnership between the Burnet Institute, Kirby Institute and National Reference Laboratory. ACCESS is funded by the Australia Department of Health. ACCESS also receives funding from specific studies, including EC Victoria, EC Australia, and PrEPX. The Burnet Institute gratefully acknowledges support from the Victorian Operational Infrastructure Support Program.
Funding Information:
The authors would like to acknowledge the contribution of the ACCESS Team members who are not coauthors of this study including: Lisa Bastian, WA Health; Deborah Bateson, Family Planning New South Wales (NSW); Scott Bowden, Doherty Institute; Mark Boyd, University of Adelaide; Allison Carter, Kirby Institute, University of New South Wales (UNSW) Sydney; Aaron Cogle, National Association of People with HIV Australia; Jane Costello, Positive Life NSW; Wayne Dimech, National Serology Reference Laboratory; Jennifer Dittmer, Burnet Institute; Jeanne Ellard, Australian Federation of AIDS Organisations; Christopher Fairley, Melbourne Sexual Health Centre; Lucinda Franklin, Victorian Department of Health; Jane Hocking, University of Melbourne; Jules Kim, Scarlet Alliance; Scott McGill, Australasian Society for HIV Medicine; David Nolan, Royal Perth Hospital; Prital Patel, Kirby Institute, UNSW Sydney; Stella Pendle, Australian Clinical Laboratories; Victoria Polkinghorne, Burnet Institute; Thi Nguyen, Burnet Institute; Catherine O'Connor, Kirby Institute, UNSW; Philip Reed, Kirkton Road Centre; Norman Roth, Prahran Market Clinic; Nathan Ryder, NSW Sexual Health Service Directors; Christine Selvey, NSW Ministry of Health; Michael Traeger, Burnet Institute; Toby Vickers, Kirby Institute, UNSW Sydney; Melanie Walker, Australian Injecting and Illicit Drug Users League; Lucy Watchirs-Smith, Kirby Institute, UNSW Sydney; Michael West, Victorian Department of Health. The authors also acknowledge all clinics participating in ACCESS, PrEPX or both, and their site investigators for the provision of data to support these analyses: David Baker, East Sydney Doctors; Susan Boyd, Prahran Market Clinic; Mike Catton, Victorian Infectious Diseases Reference Laboratory; Danielle Collins, The Alfred; Vincent Cornelisse, Melbourne Sexual Health Centre; Pauline Cundill, PRONTO!; Philip Cunningham, SydPath, St Vincent's Pathology; Sian Edwards, Prahran Market Clinic; Christopher K Fairley and, Melbourne Sexual Health Centre; Robert Finlayson; Taylor Square; George Forgan-Smith, Era Health; John Gall, Era Health; Helan Lau, Prahran Market Clinic; Peter Locke, PRONTO! clinic; Anna McNulty, Sydney Sexual Health Centre; Richard Moore, Northside Clinic; Emma Paige, The Alfred; Matthew Penn, PRONTO! clinic; Claire Pickett, Ballarat Community Health Centre; William Rawlinson, South Eastern Area Laboratory Services, NSW Health Pathology; Norman Roth, Prahran Market Clinic; Hans-Gerhard Schneider, Alfred Health; BK Tee, The Centre Clinic; Amanda Wade, Geelong Hospital; Jeff Willcox, Northside Clinic. The work contributed to this paper was in partnership with Treatment with Antiretrovirals and their Impact on Positive And Negative men (TAIPAN) and we would like to acknowledge members of the TAIPAN study who are not coauthors of this paper including: Andrew Carr, St Vincent's Hospital Sydney; Jennifer Hoy, Alfred Health; Kathy Petoumenos, Kirby Institute, UNSW; Julian Elliot, Alfred Health; David Templeton, Kirby Institute; Teng Liaw, School of Public Health and Community Medicine, UNSW; David Wilson, Burnet Institute; Andrew Grulich, Kirby Institute, UNSW; David Cooper, Kirby Institute, UNSW; Alisa Pedrana, Monash University; James McMahon, Alfred Health; Garrett Prestage, Kirby Institute; Martin Holt, Centre for Social Research in Health, UNSW; Christopher K. Fairley, Melbourne Sexual Health Centre; Neil McKellar-Stewart, ACON Health Sydney; Simon Ruth, Thorne Harbour Health, Phillip Keen, Kirby Institute; Craig Cooper, Positive Life NSW; Brent Allan, Living Positive Victoria; John Kaldor, Kirby Institute, UNSW. The authors would also like to acknowledge the PrEPX Study team including the Principal Investigator Edwina Wright, Alfred Health and study coordinators: Brian Price; Luxi Lal; John T. Lockwood; Anne Mak; Christina Chang; Judith Armishaw, Alfred Health. ACCESS is a partnership between the Burnet Institute, Kirby Institute and National Reference Laboratory. ACCESS is funded by the Australia Department of Health. ACCESS also receives funding from specific studies, including EC Victoria, EC Australia, and PrEPX. The Burnet Institute gratefully acknowledges support from the Victorian Operational Infrastructure Support Program.
Publisher Copyright:
© Long Nguyen, Mark Stoové, Douglas Boyle, Denton Callander, Hamish McManus, Jason Asselin, Rebecca Guy, Basil Donovan, Margaret Hellard, Carol El-Hayek. Originally published in the Journal of Medical Internet Research (http://www.jmir.org),24.06.2020. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
Keywords
- Confidentiality
- Data linkage
- Evaluation studies as a topic
- Medical record linkage
- Public health surveillance
- Sensitivity and specificity
- Sentinel surveillance
