Literature DB >> 7626675

Record linkage in Australian epidemiological research: health benefits, privacy safeguards and future potential.

B Sibthorpe1, E Kliewer, L Smith.   

Abstract

Epidemiologists are increasingly concerned with the health effects of interventions and of exposure to noninfectious agents, but there may be long periods between exposure and outcome. Collecting information from respondents is a costly and often inefficient way of obtaining the longitudinal data necessary to study these effects. Linking existing data can be an effective and efficient alternative. However, it is often not practicable to obtain informed consent from the individuals whose records are to be linked. This raises important issues relating to protection of privacy. This paper examines the health benefits and privacy issues of epidemiological and health services research involving record linkage in Australia. The future potential for studies based on record linkage is discussed in the context of recent national and international developments in data protection. In the interests of public health and the rational use of health resources a balance must be struck between protecting individual privacy and conducting such health research for the common good.

Keywords:  Biomedical and Behavioral Research

Mesh:

Year:  1995        PMID: 7626675     DOI: 10.1111/j.1753-6405.1995.tb00439.x

Source DB:  PubMed          Journal:  Aust J Public Health        ISSN: 1035-7319


  11 in total

1.  Comparison between research data and routinely collected register data for studying childhood health.

Authors:  M Gissler; M R Järvelin; E Hemminki
Journal:  Eur J Epidemiol       Date:  2000-01       Impact factor: 8.082

2.  First experiences in the implementation of biometric technology to link data from Health and Demographic Surveillance Systems with health facility data.

Authors:  Adwoa Serwaa-Bonsu; Abraham J Herbst; Georges Reniers; Wilfred Ijaa; Benjamin Clark; Chodziwadziwa Kabudula; Osman Sankoh
Journal:  Glob Health Action       Date:  2010-02-24       Impact factor: 2.640

Review 3.  Pharmacoepidemiologic research in Australia: challenges and opportunities for monitoring patients with rheumatic diseases.

Authors:  Christine Y Lu
Journal:  Clin Rheumatol       Date:  2009-02-04       Impact factor: 2.980

4.  Data linkage infrastructure for cross-jurisdictional health-related research in Australia.

Authors:  James H Boyd; Anna M Ferrante; Christine M O'Keefe; Alfred J Bass; Sean M Randall; James B Semmens
Journal:  BMC Health Serv Res       Date:  2012-12-29       Impact factor: 2.655

5.  Assessing the impact of prescribed medicines on health outcomes.

Authors:  Wayne D Hall; Jayne Lucke
Journal:  Aust New Zealand Health Policy       Date:  2007-02-15

6.  Methods for dealing with discrepant records in linked population health datasets: a cross-sectional study.

Authors:  Christine L Roberts; Charles S Algert; Jane B Ford
Journal:  BMC Health Serv Res       Date:  2007-01-30       Impact factor: 2.655

7.  An evaluation of a data linkage training workshop for research ethics committees.

Authors:  Kate M Tan; Felicity S Flack; Natasha L Bear; Judy A Allen
Journal:  BMC Med Ethics       Date:  2015-03-04       Impact factor: 2.652

8.  Staying Quit After Release (SQuARe) trial protocol: a randomised controlled trial of a multicomponent intervention to maintain smoking abstinence after release from smoke-free prisons in Victoria, Australia.

Authors:  Jesse T Young; Cheneal Puljević; Alexander D Love; Emilia K Janca; Catherine J Segan; Donita Baird; Rachel Whiffen; Stan Pappos; Emma Bell; Stuart A Kinner
Journal:  BMJ Open       Date:  2019-06-04       Impact factor: 2.692

9.  Challenges Associated with Cross-Jurisdictional Analyses using Administrative Health Data and Primary Care Electronic Medical Records in Canada.

Authors:  Alan Katz; Jennifer Enns; Sabrina T Wong; Tyler Williamson; Alexander Singer; Kimberlyn McGrail; Jeffery A Bakal; Carole Taylor; Sandra Peterson
Journal:  Int J Popul Data Sci       Date:  2018-10-05

10.  Accuracy and completeness of patient pathways--the benefits of national data linkage in Australia.

Authors:  James H Boyd; Sean M Randall; Anna M Ferrante; Jacqueline K Bauer; Kevin McInneny; Adrian P Brown; Katrina Spilsbury; Margo Gillies; James B Semmens
Journal:  BMC Health Serv Res       Date:  2015-08-08       Impact factor: 2.655

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