Patients’ online access to their primary care electronic health records and linked online services: implications for research and practice

Online access to medical records and linked services, including requesting repeat prescriptions and booking appointments, enables patients to personalize their access to care. However, online access creates opportunities and challenges for both health professionals and their patients, in practices and in research. The challenges for practice are the impact of online services on workload and the quality and safety of health care. Health professionals are concerned about the impact on workload, especially from email or other online enquiry systems, as well as risks to privacy. Patients report how online access provides a convenient means through which to access their health provider and may offer greater satisfaction if they get a timely response from a clinician. Online access and services may also result in unforeseen consequences and may change the nature of the patient-clinician interaction. Research challenges include: (1) Ensuring privacy, including how to control inappropriate carer and guardian access to medical records; (2) Whether online access to records improves patient safety and health outcomes; (3) Whether record access increases disparities across social classes and between genders; and (4) Improving efficiency. The challenges for practice are: (1) How to incorporate online access into clinical workflow; (2) The need for a business model to fund the additional time taken. Creating a sustainable business model for a safe, private, informative, more equitable online service is needed if online access to records is to be provided outside of pay-for-service systems

Detailed Perceptions by Health Service Providers Around EHRs: A Case Study of Australia’s e-Health Solution

The Australian government has invested heavily in the national e-health solution; namely, initially, the PCEHR, now MyHealth Record. A critical success factor is concerned with the perception and expectations of health service providers regarding the MyHealth Record. Further, it is important to understand the effect of the MyHealth Record on the patient-provider relationship, quality of care, and service providers’ views toward data security and confidentiality. The primary goal of this pilot study is to understand the health service providers’ perceptions and expectations; and thereby, predict the likely sustainability of the MyHealth Record. This has important implications in general as all OECD countries’ transition to large-scale e-health solutions

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

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.Rachel Canaway, Douglas IR Boyle, Jo‐Anne E Manski‐Nankervis, Jessica Bell, Jane S Hocking, Ken Clarke, Malcolm Clark, Jane M Gunn, Jon D Emer

An overview of electronic personal health records

© 2018 Fellowship of Postgraduate Medicine Electronic Personal Health Record systems are providing health consumers with greater access and control to their health records by shifting these records from being a health provider-centred Electronic Health Record, to a patient-centred, Electronic Personal Health Record (ePHR). Based on the delivery system, ePHR systems are classified into standalone, tethered, and integrated or unified ePHRs. While national approaches of implementing integrated ePHR vary, the middle out method has been recognised as the ideal approach. It is worth considering the adoption of ePHRs has been slow due to several factors, including technical, individual, environmental, social, and legal factors. This paper provides a representative overview of an ePHR system, outlining its definition, types, architectures, and nationwide approaches of its implementation. Additionally, the drivers and hindrances to health consumer adoption are discussed

Understanding the Cultural Utility of Mainstream Addiction Recovery Mutual Support Groups for Indigenous Peoples’: A Case Study of SMART Recovery through an Indigenous Australian Lens

Background: Mutual support groups are one of the world’s most commonly used forms of addiction recovery support. Participation has been associated with reduced substance use and abstinence. There is, however, limited empirical understanding of how suitable or beneficial group participation is for Indigenous peoples in similarly colonised countries (Australia, New Zealand, Canada, United States of America, Hawaii). This thesis aims to improve our understanding of the cultural utility of mainstream addiction recovery mutual support group programmes for Indigenous peoples. The SMART Recovery programme will be used as a case study with Indigenous Australia as a cultural milieu. Methods: This thesis presents findings from three published empirical studies. In Study 1: a PRISMA-informed systematic literature review was performed to determine the number, nature, and scope of internationally available evidence on Indigenous people’s experiences of and outcomes associated with attending mutual support groups. Study 2: used an Indigenous-lensed multi-methods research design to explore: 1) How Indigenous Australian facilitators (n=10) and group members (n=11) experience SMART Recovery and utilise it as a recovery resource; and 2) If the SMART Recovery programme components and operational process are culturally suitable and helpful. In Study 3: a three-round Delphi synthesised with Indigenous research methods was conducted to: 1) Obtain expert opinion on the cultural utility of the Indigenous SMART Recovery handbook; 2) Gain consensus on areas in the SMART Recovery programme that require cultural modification; and 3) Seek advice on how modifications could be implemented in future programme design and delivery. Results: Study 1 revealed a paucity of empirical knowledge on the acceptability and outcomes of addiction recovery mutual support groups for Indigenous peoples of Australia, New Zealand, Canada, United States of America and Hawaii. Study 2 offers first insights into how Indigenous peoples in Australia perceive and use SMART Recovery. Based on their experiences, a range of culturally informed programme modifications were suggested to enhance its cultural utility. Study 3 confirmed that cultural modifications are needed to enhance the cultural utility of SMART Recovery for Indigenous Australian contexts. An expert panel reached consensus on five key programme modifications and developed a set of strategies to help SMART Recovery integrate these into future programme planning and design. Study 2 and 3 also demonstrated the promise of two innovative research methodologies that could be used to involve Indigenous peoples in the design and evaluation of mainstream mutual support group programmes without added burden to personal, community and/or professional obligations. Conclusions: This thesis presents the first series of studies to investigate the cultural utility of mainstream mutual support groups for Indigenous peoples. Findings suggest that culturally appropriate language, culture-based programme activities and less rigid group delivery formats would enhance suitability and helpfulness of existing programmes as a recovery resource for Indigenous peoples. Thesis findings have implications for future planning and development of SMART Recovery and other mutual support groups like 12-steps programmes. There is an urgent need to extend this research to Indigenous peoples of New Zealand, Canada, United States of America, and Hawaii – whose perspectives are not yet documented in the peer-reviewed mutual support group literature

Using the Decomposed Theory of Planned Behaviour to explain Healthcare Consumer Adoption of Electronic Health Records

An Electronic Health Record (EHR) can be defined as the digital version of an individual’s medical history. EHRs are intended to improve the quality and efficiency of healthcare, decrease costs and prevent medical errors. Previous studies have shown that achievement of the potential benefits from EHRs depends largely upon the adoption and continued use of EHR services by health care consumers (Esmaeilzadeh and Sambasivan 2017; Hanna et al. 2017). Further research, therefore, is necessary to better understand the factors that influence consumer EHR adoption. The proposed study aims to investigate the factors influencing consumer adoption of EHRs. A model based on the Decomposed Theory of Planned Behaviour (DTPB) (Taylor and Todd 1995) provides the theoretical framework for the research. The goal is to improve understanding of how health care consumers perceive this technology and the factors that influence their intentions to use it

Young people imagining a new democracy: Literature review

This literature review was commissioned by the Whitlam Institute within the University of Western Sydney (UWS) to provide context for the Imagining a New Democracy Project. The project is a collaboration between the Whitlam Institute and the Office of University Engagement at UWS. The Foundation for Young Australians is the primary funding partner. The project seeks: • to better understand younger Australian’s attitudes towards and active participation in democratic processes; • to work with young people to ‘imagine’ how Australian democracy might work better (for them and indeed for all citizens); • to identify the potential implications for public policy; • to promote consideration of these matters by policy-makers and the public. The literature review explores international and Australian literature on youth participation in democracy. Key word searches were used on a number of sociological and social and political science databases, and in addition, the online libraries of organisations and networks were also scanned for relevant research reports. In summary, the literature review finds that there is clear evidence that young people in Australia are engaged with political and social issues, but that they feel alienated by formal, institutionalised politics and are less inclined to engage in traditional forms of participation

The legal and ethical implications of electronic patient health records and e-health on Australian privacy and confidentiality law

This thesis addresses the legal and ethical issues posed by introduction of electronic patient health records. Against the background of an analysis of broader conceptual and theoretical understandings of development of electronic patient health records (EPR) and e-health regimes in Australia and comparable countries over the last few decades, the thesis critically examines the extent to which its implementation is consistent with established legal and ethical principles underpinning traditional health assumptions and practices. To this end the thesis explores the evolution and progress of modern health, technology, law and governance issues in e-health, identifying critical features of emerging EPR and e-health systems such as broad innovative industry technology involvement, and potentially problematic practices such as personal information ‘collection’, ‘sharing’ and ‘networking’ activities. The thesis contends that while adopting technology such as e-health comports with modern day progress, the transformational power of technology on society and individual lives has the potential to impose significant human costs for health consumers and everyday life. Through an analysis of the new electronic regime the thesis reveals how Australian Governments, healthcare providers, consumers and other stakeholders interpret and deal with advances in personal healthcare information changes in the new electronic system. The healthcare privacy model advanced in the thesis, in conjunction with an analysis grounded in theories of deliberative democracy, provides the foundation for the thesis argument that the legal, ethical and democratic challenges posed to privacy and participation interests by implementation of e-health policies can best be alleviated in Australia through further structural reforms beyond those recently proposed by a federal review. The thesis contends that an independent ‘Council’, with broad powers to consult and engage the public is an important part of the solution to the political and economic problems identified by the thesis analysis showing that individual privacy protection in healthcare is threatened and that earlier privacy protection mechanisms may prove inadequate in the emerging global information era