Data linkage and computerised algorithmic coding to enhance individual clinical care for Aboriginal people living with chronic hepatitis B in the Northern Territory of Australia – Is it feasible?

Background Chronic hepatitis B (CHB) is endemic in the Aboriginal population of Australia’s Northern Territory (NT). However, many people’s hepatitis B virus (HBV) status remains unknown. Objective 1. To maximise the utility of existing HBV test and vaccination data in the NT by creating a linked dataset and computerised algorithmic coding. 2. To undertake rigorous quality assurance processes to establish feasibility of using the linked dataset and computerised algorithmic coding for individual care for people living with CHB. Methods Step 1: We used deterministic data linkage to merge information from three separate patient databases. HBV testing and vaccination data from 2008–2016 was linked and extracted for 19,314 people from 21 remote Aboriginal communities in the Top End of the NT. Step 2: A computerised algorithm was developed to allocate one of ten HBV codes to each individual. Step 3: A quality assurance process was undertaken by a clinician, using standardised processes, manually reviewing all three databases, for a subset of 5,293 Aboriginal people from five communities to check the accuracy of each allocated code. Results The process of data linking individuals was highly accurate at 99.9%. The quality assurance process detected an overall error rate of 17.7% on the HBV code generated by the computerised algorithm. Errors occurred in source documentation, primarily from the historical upload of paper-based records to electronic health records. An overall HBV prevalence of 2.6% in five communities was found, which included ten cases of CHB who were previously unaware of infection and not engaged in care. Conclusions Data linkage of individuals was highly accurate. Data quality issues and poor sensitivity in the codes produced by the computerised algorithm were uncovered in the quality assurance process. By systematically, manually reviewing all available data we were able to allocate a HBV status to 91% of the study population.

[1]  Y. Liaw Natural history of chronic hepatitis B virus infection and long‐term outcome under treatment , 2009, Liver international : official journal of the International Association for the Study of the Liver.

[2]  K. Howard,et al.  Antiviral therapy for hepatitis B-related liver cancer prevention is more cost-effective than cancer screening. , 2009, Journal of hepatology.

[3]  R. Chaisson,et al.  Validation of a Hierarchical Deterministic Record-Linkage Algorithm Using Data From 2 Different Cohorts of Human Immunodeficiency Virus-Infected Persons and Mortality Databases in Brazil , 2008, American journal of epidemiology.

[4]  B. Cowie,et al.  Using data linkage to improve the completeness of Aboriginal and Torres Strait Islander status in communicable disease notifications in Victoria , 2016, Australian and New Zealand journal of public health.

[5]  J. Hocking,et al.  Prevalence of HIV among Aboriginal and Torres Strait Islander Australians: a systematic review and meta-analysis. , 2017, Sexual health.

[6]  B. Cowie,et al.  The molecular epidemiology of hepatitis B in the Indigenous people of northern Australia , 2013, Journal of gastroenterology and hepatology.

[7]  H. Kumada,et al.  [Chronic hepatitis B]. , 2001, Nihon Shokakibyo Gakkai zasshi = The Japanese journal of gastro-enterology.

[8]  Kristijan H Kahler,et al.  Evaluation of Healthcare Interventions and Big Data: Review of Associated Data Issues , 2017, PharmacoEconomics.

[9]  Jane Davies,et al.  Establishing contemporary trends in hepatitis B sero-epidemiology in an Indigenous population , 2017, PloS one.

[10]  S. Alavian,et al.  Global prevalence, treatment, and prevention of hepatitis B virus infection in 2016: a modelling study. , 2018, The lancet. Gastroenterology & hepatology.

[11]  S. Tong,et al.  Hepatocellular carcinoma in Australia's Northern Territory: high incidence and poor outcome , 2014, The Medical journal of Australia.

[12]  J. Davis,et al.  Screening for hepatitis B in East Arnhem Land: a high prevalence of chronic infection despite incomplete screening , 2010, Internal medicine journal.

[13]  G. Harper Linkage of Maternity Hospital Episode Statistics data to birth registration and notification records for births in England 2005–2014: Quality assurance of linkage of routine data for singleton and multiple births , 2018, BMJ Open.

[14]  S. Tong,et al.  Sub-optimal protection against past hepatitis B virus infection where subtype mismatch exists between vaccine and circulating viral genotype in northern Australia. , 2018, Vaccine.

[15]  Sean M. Randall,et al.  Accuracy and completeness of patient pathways – the benefits of national data linkage in Australia , 2015, BMC Health Services Research.

[16]  A. Suk-Fong Lok Hepatitis B Treatment: What We Know Now and What Remains to Be Researched , 2018, Hepatology communications.

[17]  R. E. Watkins,et al.  Improving the accuracy of Aboriginal and non-Aboriginal disease notification rates using data linkage , 2008, BMC health services research.

[18]  D. Lavanchy,et al.  Hepatitis B virus epidemiology, disease burden, treatment, and current and emerging prevention and control measures , 2004, Journal of viral hepatitis.

[19]  B. Cowie,et al.  Molecular virology of hepatitis B virus, sub‐genotype C4 in northern Australian Indigenous populations , 2014, Journal of medical virology.

[20]  P. Aylin,et al.  Data linkage between existing healthcare databases to support hospital epidemiology. , 2011, The Journal of hospital infection.

[21]  L. Lin,et al.  A concordance correlation coefficient to evaluate reproducibility. , 1989, Biometrics.

[22]  Bette C Liu,et al.  The end of the Australia antigen? An ecological study of the impact of universal newborn hepatitis B vaccination two decades on. , 2012, Vaccine.

[23]  Chronic hepatitis B prevalence in Australian Aboriginal and Torres Strait Islander people before and after implementing a universal vaccination program: a systematic review and meta-analysis. , 2019, Sexual health.

[24]  D. Jolley,et al.  Empirical Aspects of Linking Intensive Care Registry Data to Hospital Discharge Data without the use of Direct Patient Identifiers , 2011, Anaesthesia and intensive care.

[25]  Anne Marie Meyer,et al.  Linking Data for Health Services Research: A Framework and Instructional Guide , 2014 .

[26]  A J Hall,et al.  The influence of age on the development of the hepatitis B carrier state , 1993, Proceedings of the Royal Society of London. Series B: Biological Sciences.

[27]  Harvey Goldstein,et al.  A guide to evaluating linkage quality for the analysis of linked data , 2017, International journal of epidemiology.

[28]  S. Pircher,et al.  Validation of patient demographic data, Northern Territory hospitals, 2008 , 2008 .

[29]  Jean Christophe Fotso,et al.  Psychosocial support and resilience building among health workers in Sierra Leone: interrelations between coping skills, stress levels, and interpersonal relationships , 2015, BMC Health Services Research.

[30]  C. Dolea,et al.  World Health Organization , 1949, International Organization.

[31]  T. Carey,et al.  Long-term trends in supply and sustainability of the health workforce in remote Aboriginal communities in the Northern Territory of Australia , 2017, BMC Health Services Research.