Personally Controlled Electronic Health Record Research Articles

Systematic Literature Review of My Health Record System

Background: On 2010 Australia launched a personally controlled electronic health record (PCEHR) later renamed and augmented by the My Health Record Act 2012 Cth. The main goal of the present systematic literature review was to assess if the system has improved Australia’s healthcare system according to the objectives stated by the federal government in the My Health Record Act 2012 Cth. Methods: This systematic literature review was based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Results: Despite the MyHR system being available for seven years, there is limited empirical evaluation regarding its progress in achieving the stated goals. The results were segregated in four themes: (1) health information fragmentation, (2) Health information quality and management, (3) adverse medical events and duplication of treatment and (4) coordination of care. Regarding theme 1, it was evidenced that the system could reduce health information fragmentation; however, gaps in the workforce adoption were identified as a problem. About topic 2, improved access to information and possible misinterpretation were found. Theme 3 lacked research and theme 4 presented contradiction in the results. 
 Conclusion: The My Health Record (MyHR) system is founded on four key objectives. However, there is insufficient evidence that any outcomes have been achieved relating to any of the objectives. Research is required to determine whether the MyHR system helped improve Australia’s healthcare system according to the objectives stated in the Act 2012.

Personal electronic healthcare records: What influences consumers to engage with their clinical data online? A literature review.

Online electronic records such as patient portals and personally controlled electronic health records (PEHRs) have been widely viewed as a key component to modernising the delivery of healthcare but the uptake of such systems has been slow. The purpose of this literature review was to determine what influences consumers to engage and interact with their clinical data online. A scoping literature review following PRISMA guidelines was completed. Electronic patient record research published between January 2009 and December 2018 was included. Following screening and full-text reviews, a total of 64 records were included in this review. Three key areas of influence on consumer engagement with their clinical data online emerged: demographic factors affecting consumer interaction with PEHRs; consumers' perceived benefits and detriments of PEHR use; and the influence of PEHR use on consumer empowerment and responsibility. Consumer motivation and readiness for engaging with their clinical data online and their long-term ongoing use of these systems requires further exploration. As worldwide rates of consumer interactions with individual online clinical data remain low, what influences consumer engagement with a PEHR remains unknown. Further research into the consumer perspective of, and interaction with, a PEHR, needs to be undertaken to determine if factors such as frequent usage of the system by consumers leads to improved clinical outcomes.

Evaluating the Contextual Integrity of Australia's My Health Record.

My Health Record (MyHR) is Australia's national personally-controlled electronic health record. Initially established in 2012, it moved from an opt-in to an opt-out system in 2018. This paper considers the privacy aspects of MyHR shared health summary. Drawing on Nissenbaum's theory of privacy as contextual integrity, we argue that the shift in the event-specific nature of information sharing leads to MyHR breaching contextual integrity. As per Nissenbaum's decision heuristic for contextual integrity, we evaluate this breach through a reflection on the changing nature of health care, including patient empowerment, and the greater complexity of care. It is evident that more needs to be known about the benefits of shared health summaries, as well as the actual use of MyHR by clinicians and patients. Though we focus on MyHR, this evaluation has broader applicability to other national electronic health records and electronic shared health summaries.

Demographic characteristics of Australian health consumers who were early registrants for opt-in personally controlled electronic health records.

Differential uptake of, or access to, personal electronic health records (PEHRs) has the potential to impact on health disparities among certain social groups. In 2012, the Australian Government introduced the Personally Controlled Electronic Health Record (PCEHR), an opt-in system operated by the then National E-Health Transition Authority (NEHTA). In July 2016, the My Health Record (MyHR), an opt-out model, operated by the Australian Digital Health Agency replaced the PCEHR, providing additional support for consumers. This research was carried out between 2012 and 2015, covering the opt-in PCEHR phase. The aim of the study was to explore demographic characteristics of Australian health consumers who were first to register for a PEHR, and to identify the age and gender populations less likely to register for a PEHR in the opt-in format. The study aimed to provide early data on registrants and potential methods to encourage individuals to register for a PEHR. A cross-sectional study investigated differences in registrations for PEHRs from 2012 to 2015 by age and sex. Results revealed that males were less likely to register than females, and adolescents of both sexes were the least likely to register when compared with any other age group. Similarly, middle-aged males had among the lowest reported registrations, as did older females. While e-health has the potential to improve health outcomes and PEHRs the potential to empower consumers to better manage their health and improve their access health services, evidence from this study suggested that some population groups that experience health inequalities (e.g. older people) were underrepresented among registrants for PEHRs. As income, ethnicity and education are major drivers for health disparities in Australia, future research should focus on uptake and use of PEHRs (now the MyHR) from the perspective of these variables.

The Australian PCEHR System: Ensuring Privacy and Security through an Improved Access Control Mechanism

An Electronic Health Record (EHR) is designed to store diverse data accurately from a range of health care providers and to capture the status of a patient by a range of health care providers across time. Realising the numerous benefits of the system, EHR adoption is growing globally and many countries invest heavily in electronic health systems. In Australia, the Government invested $467 million to build key components of the Personally Controlled Electronic Health Record (PCEHR) system in July 2012. However, in the last three years, the uptake from individuals and health care providers has not been satisfactory. Unauthorised access of the PCEHR was one of the major barriers. We propose an improved access control model for the PCEHR system to resolve the unauthorised access issue. We discuss the unauthorised access issue with real examples and present a potential solution to overcome the issue to make the PCEHR system a success in Australia.

Patient perspectives on a personally controlled electronic health record used in regional Australia.

Personally controlled electronic health records (PCEHRs) are being implemented throughout Australia; yet few studies have investigated patients' experiences of using a PCEHR. To explore patients' experiences and perspectives of using a locally developed PCEHR implemented in an Australian health service. Twelve patients completed individual semi-structured telephone interviews, which underwent inductive analysis. Participants described two main interdependent advantages of PCEHRs: improved quality of healthcare through better information sharing and enhanced patient capacity for self-management. To realise these advantages, widespread acceptance and use of PCEHRs by healthcare providers is required, and PCEHRs need to be simple to use and accessible. PCEHRs can produce tangible benefits for patients. However, maximum benefits will be realised when PCEHRs contain a complete collection of relevant health information and are carefully designed for easy use.

A Secure Role-Based Cloud Storage System For Encrypted Patient-Centric Health Records

With the rapid developments occurring in cloud services, there has been a growing trend to use cloud for large-scale data storage. Due to the increasing popularity of cloud storage, many healthcare organizations have started moving electronic health records (EHRs) to cloud-based storage systems. However, this has raised the important security issue of how to protect and prevent unauthorized access to EHR data stored in a public cloud. Several cryptographic access control schemes have been proposed to protect the security of data stored in the cloud by integrating cryptographic techniques with access control models. In this paper, we consider a novel role-based encryption technique to build a secure and flexible large-scale EHR system where role-based access control policies are enforced in a cloud environment. Then we discuss a practical EHR system called the personally controlled electronic health record (PCEHR) system recently developed by the Australian Government, and show how the security weaknesses in the PCEHR system can be addressed by our proposed scheme. The proposed system has the potential to be useful in commercial healthcare systems as it captures practical access policies based on roles in a flexible manner and provides secure data storage in the cloud enforcing these access policies.

Current patient and healthcare worker attitudes to eHealth and the personally controlled electronic health record in major hospitals.

The current health system in Australia is comprised of both electronic- and paper-based medical records. The Federal Government has approved funding for the development of an individual health identifier and a universally adopted online health repository. To determine attitudes and beliefs of patients and healthcare workers regarding the use of stored medical information and the personally controlled electronic health record (PCEHR) in selected major hospitals in Victoria. Qualitative survey of patients and healthcare workers (n = 600 each group) conducted during 2014 across five major hospitals in Melbourne to measure the awareness, attitudes and barriers to electronic health and the PCEHR. Of the patients, 93.3% support the concept of a shared electronic healthcare record, 33.7% were aware of the PCEHR and only 11% had registered. The majority of healthcare workers believed that the presence of a shared health record would result in an increased appropriateness of care and patient safety by reducing adverse drug events and improving the timeliness of care provided. However, only 46% of healthcare workers were aware of the PCEHR. This study provides a baseline evaluation of perceptions surrounding eHealth and PCHER in acute health services in five metropolitan centres. While there appears to be a readiness for adoption of these strategies for healthcare documentation, patients require motivation to register for the PCEHR, and healthcare workers require more information on the potential benefits to them to achieve more timely and efficient care.

Positive beliefs and privacy concerns shape the future for the Personally Controlled Electronic Health Record.

The uptake of the Personally Controlled Electronic Health Record (PCEHR) has been slowly building momentum in Australia. The purpose of the PCEHR is to collect clinically important information from multiple healthcare providers to provide a secure electronic record to patients and their authorised healthcare providers that will ultimately enhance the efficiency and effectiveness of healthcare delivery. Reasons for the slow uptake of the PCEHR and future directions to improve its usefulness is discussed later.

The Personally Controlled Electronic Health Record (PCEHR) for Adults with Severe Communication Impairments: Findings of Pilot Research.

To date, there is little information in the literature to guide the provision of supports for using the Personally Controlled Electronic Health Record (PCEHR) in populations with severe communication impairments associated with a range of disabilities. In this paper we will (a) outline the rationale for use of PCEHR in these populations by providing an overview of relevant research to date, and (b) present results of three integrated pilot studies aiming to investigate the barriers to and facilitators for PCEHR use by people with severe communication impairments and their service providers. Finally, we will present directions for future research on use of PCEHR by people with severe communication impairments.

Realist review to inform development of the electronic advance care plan for the personally controlled electronic health record in Australia.

Australia has invested heavily to introduce an opt-in personally controlled electronic healthcare record (PCEHR), which incorporates an element of advance care planning (ACP). A further investment of $10 million AUD has been made to increase capability to a fully integrated electronic ACP (eACP). Australia has an aging population, the majority of whom will live, be cared for, and die in the community. ACP in the community setting can support older people to navigate their illness trajectories and health decision-making. Sharing this information with care providers across different healthcare settings is crucial. The eACPs was conceptualized as a complex social intervention. We conducted a realist review of the literature to explore evidenced-based models of eACP for community-dwelling older people, with chronic, life-limiting illness. A scoping search identified gray literature; a systematic search for empirical evidence was conducted of eight databases, including PubMed and Google Scholar. Seventeen articles were included, along with 71 other documents. Realist synthesis based on data collected using original abstraction forms was used to develop a model to explain what worked for whom and in what circumstances. Electronic physician reminders and information to patients increased ACP completions. However, there were no precedents for transferring ACPs into a national PCEHR. We developed a model informed by six core themes from the literature: information sharing, process, initiating conversations, dignity of life (individualized approach), education (individual and community), and collaborative practice (engagement). End-of-life care that is consistent with older people's values and preferences requires robust care processes and efficient information sharing across the healthcare continuum.

Effectiveness of local support for the adoption of a national programme--a descriptive study.

Change management in health care is a complex and time-consuming endeavour, and no less so in implementing technological systems. In deploying a nationwide programme, the personally controlled electronic health record (PCEHR), the Australian Government employed a number of national and local change management programmes. This article describes the processes undertaken and the experiences of introducing the PCEHR into 74 general practices across a specific area of metropolitan Melbourne. An online survey was developed by an independent evaluator and offered to all participating practices. The response rate was 82%. The deployment and testing of the eHealth infrastructure and the roll-out of the PCEHR were deeply supported through face-to-face, locally contextualised support processes. The area Medicare Local (ML), an organisation that provides support services to general practice and allied health in the community, provided support and programme coordination. This support occurred in the environment of a number of other initiatives to improve adoption. The impact and value of this support in the registration and adoption process was explored in an online survey and found to be the key factor in practice engagement and success. ML support was seen as instrumental in improving adoption and was more effective than other activities. This article highlights the role of local support, in this case, MLs, in the effective implementation of eHealth programmes across a range of stakeholder groups, in particular, general practice, and the potential for the lessons learned from the engagement model of such an entity to be more generally applied.

Unresolved Ethical Challenges for the Australian Personally Controlled Electronic Health Record (PCEHR) System: Key Informant Interview Findings

Background: A national Personally Controlled Electronic Health Record (PCEHR) system was made available across Australia in July 2012. While the technical, policy, and commercial aspects of the new Australian PCEHR system were examined thoroughly by the National E-Health Transition Authority in developing the new e-health record system, little attention was given to examining the related ethical implications of PCEHR advances. This article reports on ethical concerns about the new Australian electronic health record system identified by expert stakeholders. Methods: A qualitative study using semistructured interviews with a purposive sample of key informants from Melbourne, Canberra, Brisbane, and Sydney with expert knowledge about electronic health records was conducted. The 12 participants represented a range of health and other professionals, research, policy, and consumer/patient groups. Results: Major themes identified were the importance of privacy safeguards at implementation and in future PCEHR uses, the appropriate uses of PCEHR data in research, unique ethical challenges around children and adolescents with PCEHRs, conflicting stakeholder interests around record access and use, and cultural diversity and engagement. Conclusions: The technical, policy, and commercial aspects of the new Australian PCEHR system have been examined thoroughly to date. A greater focus is needed on the ethical implications of PCEHR advances. A continuing failure to address ethical issues in the national implementation and utilization of the PCEHR could limit its uptake and success in Australia, and is also not without risks to the future participants of such a system.

The Australian general public's perceptions of having a personally controlled electronic health record (PCEHR)

ObjectiveThe move internationally by Governments and other health providers to encourage patients to have their own electronic personal health record (e-PHRs) is growing exponentially. In Australia the initiative for a personally controlled electronic health record (known as PCEHR) is directed towards the public at large. The first objective of this study then, is to examine how individuals in the general population perceive the promoted idea of having a PCEHR. The second objective is to extend research on applying a theoretically derived consumer technology acceptance model to guide the research. MethodAn online survey was conducted to capture the perceptions and beliefs about having a PCEHR identified from technology acceptance models and extant literature. The survey was completed by 750 Queensland respondents, 97% of whom did not have a PCEHR at that time. The model was examined using exploratory factor analysis, regressions and mediation tests. ResultsFindings support eight of the 11 hypothesised relationships in the model. Perceived value and perceived risk were the two most important variables explaining attitude, with perceived usefulness and compatibility being weak but significant. The perception of risk was reduced through partial mediation from trust and privacy concerns. Additionally, web-self efficacy and ease of use partially mediate the relationship between attitude and intentions. ConclusionsThe findings represent a snapshot of the early stages of implementing this Australian initiative and capture the perceptions of Queenslanders who at present do not have a PCEHR. Findings show that while individuals appreciate the value of having this record, they do not appear to regard it as particularly useful at present, nor is it particularly compatible with their current engagement with e-services. Moreover, they will need to have any concerns about the risks alleviated, particularly through an increased sense of trust and reduction of privacy concerns. It is noted that although the respondents are non-adopters, they do not feel that they lack the necessary web skills to set up and use a PCEHR. To the best of our knowledge this is one of a very limited number of studies that examines a national level implementation of an e-PHR system, where take-up of the PCEHR is optional rather than a centralised, mandated requirement.

Personally controlled electronic health records in Australia: Challenges in communication of mental health information

The purpose of this paper was to explore the implications of mental health literacy for uptake, use and benefits of Australia’s Personally Controlled Electronic Health Record (PCEHR). A narrative review was undertaken using literature gained through university search engines, Google Scholar, and government and other reputable websites. Documents retrieved were predominantly recent (i.e., since 2005) and Australian-based. Key findings were that low levels of mental health literacy can adversely affect: Interpretations of health-related information, help-seeking behaviours, use of health services, and peer support for those living with mental illness. Consumers with low levels of mental health literacy, as observed in many disadvantaged groups in Australia, may benefit from additional support in order to use and derive the benefits envisaged for the PCEHR. It was concluded that low levels of mental health literacy may limit the uptake, use and benefits of Australia’s PCEHR. A number of possible strategies to assist consumers with low mental health literacy were discussed. It was noted that targeted approaches to addressing mental health literacy in disadvantaged groups are warranted to minimise disparity in health care access and long-term health outcomes. It was also suggested that healthcare providers could play an important role in encouraging uptake of the PCEHR by placing greater emphasis on patient education and support.

Attitudes of pregnant women towards personally controlled electronic, hospital-held, and patient-held medical record systems: a survey study.

On July 1, 2012 the Australian Government launched the personally controlled electronic health record (PCEHR). This article surveys obstetric patients about their medical record preferences and identifies barriers to adoption of the PCEHR. A survey study was conducted of antenatal patients attending a large Australian metropolitan hospital. Consecutive patients completed questionnaires during the launch phase of the PCEHR system. Quantitative and qualitative data were collected on demographics, computer access and familiarity, preference for medical record system, and perceived benefits and concerns. Of 528 women eligible to participate, 474 completed the survey (89.8%). Respondents had high levels of home access to a computer (90.5%) and the Internet (87.1%) and were familiar with using computers in daily life (median Likert scale of 9 out of 10). Despite this, respondents preferred hospital-held paper records, and only one-third preferred a PCEHR; the remainder preferred patient-held records. Compared with hospital-held paper records, respondents felt a PCEHR would reduce the risk of lost records (p<0.0001) and improve staff communication (p<0.0001). However, there were significant concerns about confidentiality and privacy of the PCEHR (p<0.0001) and lack of control (p<0.0001). Consumers see advantages and disadvantages with the PCEHR, although the majority still prefer existing record systems. To increase uptake, confidentiality, privacy, and control concerns need to be addressed.

Knowledge and attitudes regarding the personally controlled electronic health record: an Australian national survey.

The personally controlled electronic health record (PCHER) was designed to bring important information together to facilitate effective communication between clinicians and so improve patient care. This national cross-sectional survey of 405 healthcare providers and consumers found that they had relatively low awareness and knowledge about the PCEHR; that 62% of respondents believed that healthcare providers with access to the PCEHR would be able to provide better quality of care but only 50% of respondents would sign up to have a PCEHR.

A personally controlled electronic health record for Australia

On July 1, 2012 Australia launched a personally controlled electronic health record (PCEHR) designed around the needs of consumers. Using a distributed model and leveraging key component national eHealth infrastructure, the PCEHR is designed to enable sharing of any health information about a patient with them and any other health practitioner involved in their care to whom the patient allows access. This paper discusses the consumer-facing part of the program. Design of the system was through stakeholder consultation and the development of detailed requirements, followed by clinical design assurance. Patients are able to access any posted information through a web-accessible 'consumer portal.' Within the portal they are able to assert access controls on all or part of their record. The portal includes areas for consumers to record their own personal information. The PCEHR has the potential to transform the ability of patients to actively engage in their own healthcare, and to enable the emerging partnership model of health and healthcare in medicine. The ability to access health information traditionally kept within the closed walls of institutions also raises challenges for the profession, both in the language clinicians choose and the ethical issues raised by the changed roles and responsibilities. The PCEHR is aimed at connecting all participants and their interventions, and is intended to become a system-wide activity.

A Research Model of Consumers' Adoption and Continued Use of the Personally Controlled Electronic Health Record (PCEHR) System

Built on Xu and Quaddus’s 39 model of adoption and continued use of knowledge management systems, this paper develops a model of Australian consumers’ adoption and use of the Personally Controlled Electronic Health Record (PCEHR) system. Factors and variables of the developed model are discussed in detail, and hypotheses arising from the proposed model are developed as well. The developed model has both empirical and practical implications. It can be adapted for e-health applications in various contexts and different countries.

A pilot study on the views of elderly regional Australians of personally controlled electronic health records

PurposeAustralia introduced its version of personal health records in July 2012. Success of the personally controlled electronic health record (PCEHR) relies on acceptance during the early stages. The main aim of this study was to investigate the views of a sample of elderly people in a non-metropolitan region in Australia on the PCEHR, and to assess their acceptance levels of this concept. MethodsA self-administered questionnaire was distributed to a non-probability convenience sample of respondents recruited from meetings of Probus, a community club for active business and professional retirees. ResultsApproximately three-quarters of the respondents had computer and Internet access at home. If not accessed at home a computer at a general practitioner's practice was seen as beneficial in accessing the PCEHR. Respondents felt that access to their health record would help them make decisions about their own health and improve their communication with healthcare providers. The majority of respondents were in favour of the PCEHR although some expressed concerns about the security of their PCEHR. There was mixed opinion surrounding the access by health professionals to an individual's PCEHR. ConclusionThis study has revealed important information about views of the PCEHR. While the respondents were generally in favour of the concept, there were still some concerns about the security of the PCEHR suggesting further reassurance may be required. The study also highlighted some measures, in particular provision of General Practitioner computer access points and print-out facilities that may need to be considered during these initial implementation stages in order to improve adoption rates once the technology is fully available.