Gathering data for decisions: best practice use of primary care electronic records for research

Abstract

Summary 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.

Australian general practitioners’ attitudes to the extraction of research data from electronic health records

“…10 Recent literature proposing best-practice principles and models for using primary care data was unable to take into account Australian GPs' attitudes, mentioning the hitherto paucity of Australian evidence. 18 The results of this study support their proposed principles of data de-identification, transparency and appropriate consideration of outcomes.…”

Communication of advance care planning decisions: a retrospective cohort study of documents in general practice

“…In Australia, general practice and hospital records are not electronically linked. (55) The current methods of communicating ACP documents from general practice to hospitals (for example, facsimile, email, postal services and, in some rural areas, manual collection) are not sustainable. (27) Concerns regarding the con dentiality of electronic health records continue and in Australia, facsimile technology is being phased out of healthcare settings.…”

Cohort Profile: Effectiveness of a 12-Month Patient-Centred Medical Home Model Versus Standard Care for Chronic Disease Management among Primary Care Patients in Sydney, Australia

“…Despite general practices being the first point of health-related interactions among the predominant percentage of Australians, research based on GP data is disproportionately low [25]. To our knowledge, the WellNet program is the first study in Australia to generate the first real-world evidence on the feasibility and effectiveness of a comprehensive PCMH model with the use of primary care-based data.…”

“…A number of initiatives have recently been undertaken to integrate primary care for the management chronic diseases by government and primary care organisations, including the 'Australian Better Health Initiative', 'National Primary Health Care Strategy Framework', and 'Australian Primary Care Collaboratives Program' [23,24]. Though encouraging, primary care-based data and research on the effectiveness and feasibility of these initiatives providing a coordinated, multi-disciplinary team (MDT) care for long-term chronic disease management remains limited and not definitive [25,26].…”