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Type: Journal article
Title: Gathering data for decisions: best practice use of primary care electronic records for research
Author: Canaway, R.
Boyle, D.
Manski-Nankervis, J.
Bell, J.
Hocking, J.
Clarke, K.
Clark, M.
Gunn, J.
Emery, J.
Citation: Medical Journal of Australia, 2019; 210(S6):S12-S16
Publisher: Wiley Online Library
Issue Date: 2019
ISSN: 0025-729X
Statement of
Rachel Canaway, Douglas IR Boyle, Jo‐Anne E Manski‐Nankervis, Jessica Bell, Jane S Hocking, Ken Clarke, Malcolm Clark, Jane M Gunn, Jon D Emery
Abstract: In Australia, there is limited use of primary health care data for research and for data linkage between health care settings. This puts Australia behind many developed countries. In addition, without use of primary health care data for research, knowledge about patients' journeys through the health care system is limited. There is growing momentum to establish "big data" repositories of primary care clinical data to enable data linkage, primary care and population health research, and quality assurance activities. However, little research has been conducted on the general public's and practitioners' concerns about secondary use of electronic health records in Australia. International studies have identified barriers to use of general practice patient records for research. These include legal, technical, ethical, social and resource-related issues. Examples include concerns about privacy protection, data security, data custodians and the motives for collecting data, as well as a lack of incentives for general practitioners to share data. Addressing barriers may help define good practices for appropriate use of health data for research. Any model for general practice data sharing for research should be underpinned by transparency and a strong legal, ethical, governance and data security framework. Mechanisms to collect electronic medical records in ethical, secure and privacy-controlled ways are available. Before the potential benefits of health-related data research can be realised, Australians should be well informed of the risks and benefits so that the necessary social licence can be generated to support such endeavours.
Keywords: Data collection; Datasets as topic; Ethics, research; Evidence-based medicine; General practice; Health services research; Population health; Technology
Rights: © 2019 The Authors. Medical Journal of Australia published by AMPCo Pty Ltd This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
RMID: 0030112792
DOI: 10.5694/mja2.50026
Grant ID:
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