National E-Health Transition Authority Research Articles

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.

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 eCollaborative: using a quality improvement collaborative to implement the National eHealth Record System in Australian primary care practices.

Quality problemThe new national patient-controlled electronic health record is an important quality improvement, and there was a pressing need to pilot its use in Australian primary care practices. Implementation of electronic health records in other countries has met with mixed success.Initial assessmentNew work was required in general practices participating in the national electronic health record. National implementers needed to engage with small private general practices to test the changes before general introduction.Choice of solutionThe National E-health Transition Authority contracted the Improvement Foundation Australia to conduct a quality improvement collaborative based on 9 years of experience with the Australian Primary Care Collaborative Program.ImplementationAims, measures and change ideas were addressed in a collaborative programme of workshops and supported activity periods. Data quality measures and numbers of health summaries uploaded were collected monthly. Challenges such as the delay in implementation of the electronic health summary were met.EvaluationFifty-six practices participated. Nine hundred and twenty-nine patients registered to participate, and 650 shared health summaries were uploaded. Five hundred and nineteen patient views occurred. Four hundred and twenty-one plan/do/study/act cycles were submitted by participating practices.Lessons learnedThe collaborative methodology was adapted for implementing innovation and proved useful for engaging with multiple small practices, facilitating low-risk testing of processes, sharing ideas among participants, development of clinical champions and development of resources to support wider use. Email discussion between participants and system designers facilitated improvements. Data quality was a key challenge for this innovation, and quality measures chosen require development. Patient participants were partners in improvement.

Specifying and building interoperable eHealth systems: ODP benefits and lessons learned

This paper describes the experiences of Australia’s National E-Health Transition Authority in using the RM-ODP to address a number of interoperability challenges in Australian eHealth. The RM-ODP viewpoints provide the separation of concerns across a specification, allowing direct support of independent capability levels within an eHealth community. The RM-ODP provides precise architectural expression, including that of business and policy contexts critical for eHealth. This precision is important for a tools-based architectural approach that supports traceability between requirements, design and implementation. The paper identifies some issues encountered while using the RM-ODP, which provide input into further standardisation efforts.

Sound Foundations: Leveraging International Standards for Australia's National Ehealth System

Background: Australia is currently in the process of deploying a national personally controlled electronic health record (PCEHR). This is being built using a combination of international standards and pro les as well as Australian Standards and with speci cations developed by the National eHealth Transition Authority (NeHTA). Objective: There exists a poor appreciation of how the complex construction of the overall system is supported and protected by multiple international standards. These fundamental underpinnings have been sourced from international standards groups such as Health Level Seven (HL7) and Integrating the Health Enterprise (IHE) as well as developed locally. In addition, other services underlie this infrastructure such as secure messaging, the national Health Identi cation Service and the National Authentication Service for Health (NASH). Methods: An analysis of the national e-health system demonstrates how this model of standards and service integration results in a complex service oriented architecture. Results: The expected bene ts from the integrated yet highly dependent nature of the national ehealth system are improved patient outcomes and signi cant cost savings. These are grounded and balanced by the current and future challenges that include incorporating the PCEHR into clincial work ows and ensuring relevant, timely, detailed clinical data as well as consistent security policy issues and unquanti ed security threats. Conclusions: Ultimately, Australia has designed an ambitious yet diverse and integrated architecture. What remains to be seen is if the challenges that the medical software industry and clinical community face in leveraging the political process in order to encourage provider and public participation in ehealth, can be achieved despite the sound underpinnings of international standards.

Developing a national emergency department data reference set based on SNOMED CT

Emergency departments around Australia use a range of software to capture data on patients' reason for encounter, presenting problem and diagnosis. The data collected are mainly based on descriptions and codes of the International Classification of Diseases, 10th revision, Australian modification (ICD-10-AM), with each emergency department having a tailored list of terms. The National E-Health Transition Authority is introducing a standard clinical terminology, the Systematized Nomenclature of Medicine--Clinical Terms (SNOMED CT), as one of the building blocks of an e-health infrastructure in Australia. The Australian e-Health Research Centre has developed a software platform, Snapper, which facilitates mapping of existing clinical terms to the SNOMED CT terminology. Using the Snapper software, reference sets of terms for emergency departments are being developed, based on the Australian version of SNOMED CT (SNOMED CT-AU). Existing software systems need to be able to implement these reference sets to support standardised recording of data at the point of care. As the terms collected will be part of a larger terminology, they will be useful for patients' admission and discharge summaries and for computerised clinical decision making. Mapping existing sets of clinical terms to a national emergency department SNOMED CT reference set will facilitate consistency between emergency department data collections and improve the usefulness of the data for clinical and analytical purposes.

E‐health in Australia: time to plunge into the 21st century

TO THE EDITOR: Pearce and Haikerwal state that “legislation to introduce health identifiers [was] recently passed by Parliament” and that e-health “can ease the patient journey, improve quality of care and reduce costs”. It is critically important to comprehend the purpose of the unique health identifier. Its primary function is to be the “key” to a patient’s clinical data and information. It is not a clinical decision-support tool that will improve care. There are many systems that require multiple identifiers for a given patient. However, the success of these systems is dependent on their ability to provide information management tools. The authors correctly state that “Australia’s health care system lags behind all other sectors of our economy in the use of computerised systems”. What must be debated is their statement that, although “general practice and community pharmacy are highly computerised, the hospital sector is not”. The debate should move from the uptake numbers for computerisation to the evidence of whether these implementations have improved care — for example, through fewer adverse drug events, decreased resource use, improved quality of care and better patient outcomes. I suspect the evidence is very thin in the Australian context. The authors observe: “Uncoordinated implementation of differing, incompatible systems within and between hospitals compounds a dire lack of national coordination of effort.” This is not a new phenomenon. We actually know what works and, in some advanced systems, what does not work. This evidence base should provide the stimulus for pursuing the changes necessary to implement effective health information technologies. These changes are more social, professional and cultural than technical. In their final comments on the National E-Health Transition Authority, Pearce and Haikerwal maintain their focus on the technologies. Can we wait 5–10 years for the e-health system to be connected via the National Broadband Network? The necessary information management tools can be implemented now. Care must be a priority. It would help if the focus was on successful implementation and a willingness to listen to those who have some degree of success in this field. A review of the National E-Health Transition Authority’s website list of clinical leaders suggests that there are few clinical informaticians currently involved.

Generic medicines literacy — minimising the potential for patient confusion

TO THE EDITOR: Prescribing and dispensing generic medicines is an option to reduce costs in the community and is also common practice in public hospitals. In addit ion to the i s sue s d i scus sed by McLachlan, we have noted a concerning trend in the “branding” of many new generic medicines that has the potential to add to the confusion for patients, prescribers and pharmacists. Medicines with special release properties are branded with suffixes as a reminder of their longer duration of action, such as Sustained Release (eg, Tramal SR; CSL Limited) or eXtended Release (eg, Efexor-XR; Wyeth Australia). Different formulations may also use a suffix to indicate distinguishing properties, such as “dispersible” in Rulide D (Sanofi-Aventis) or “osmotic release oral system” in Adalat OROS (Bayer Schering). However, these suffixes, while meaningful, can be a source of misunderstanding about dosing intervals and length of action, leading to errors. A standard nomenclature does not exist, even for formulation descriptors. Adding to this confusion, generic medicine manufacturers are now marketing products with prefixes or suffixes, not to denote a modified formulation but to place their “brand” on the medicine. Ascent Pharmaceuticals has three different suffixes/prefixes for its generic products, reflecting the names of previous manufacturers (eg, Quinapril-GA, GN-Carvedilol), and two suffixes for simvastatin (GA and DP). Spirit Pharmaceuticals adds its name to some products (eg, Simvastatin-Spirit). Taking an oral medication history becomes challenging when patients state they use “Spirit” medication for their cholesterol, “GN” tablets for their heart and “GA” tablets for their high blood pressure. With the many generic “brands” now available (eg, 22 simvastatin products), packs with similar labelling lined up on the pharmacy or patient’s shelves increase the risk of wrong selection. Although no reports have been published to date, similarities in brand prefixes may cause medication errors in electronic prescribing and dispensing systems, when an incorrect medication is selected from a dropdown menu. Entering “Apo” in some systems selects more than 40 products manufactured by Apotex, which uses a naming pattern of the generic drug prefixed by Apo (eg, Apo-Alendronate), as well as APO-go (Hospira), which is apomorphine (and does not contain “go”). This situation could be avoided in future if the National E-Health Transition Authority’s Australian Medicines Terminology and its editorial principles are adopted in systems. These rules require that all medicines are represented by descriptions that list the generic name first, with the sponsor’s name following in parentheses (Paul Frosdick, Chief Terminologist, National E-Health Transition Authority, personal communication, 25 August 2010). The Food and Drug Administration in the United States and the Therapeutic Goods Administration in Australia have developed documents outlining approved medicines terminology, but there are no official lists of approved suffixes or prefixes. The Institute for Safe Medication Practices, a nonprofit US-certified patient safety organisation internationally regarded as an expert in medication safety, has recognised this problem and maintains a list of products with drug name suffixes and their meanings. With more generic options available, good communication between medical and pharmacy clinicians and patients is essential to clarify the indication, along with the specific name, of medications prescribed. Pharmaceutical manufacturers need to consider the impact of meaningless prefixes and suffixes, which add to the confusion and potentially contribute to medication errors. National authorities should improve overall governance of labelling of generic medicines, to prevent errors reaching patients.

E‐health in Australia: time to plunge into the 21st century

E-health is the health care buzzword of the moment, with a person-controlled electronic health record funded in the 2010 federal Budget and legislation to introduce health identifiers recently passed by Parliament. E-health can ease the patient journey, improve quality of care and reduce costs. Australia's health care system lags behind all other sectors of our economy in the use of computerised systems. While general practice and community pharmacy are highly computerised, the hospital sector is not. Adopting e-health is likely to result in higher quality practice, but general practice and hospitals need a mechanism for securely sharing patient data. Uncoordinated implementation of differing, incompatible systems within and between hospitals compounds a dire lack of national coordination of effort. Multiple funding streams and jurisdictions and the lack of an implementation strategy have slowed e-health development. Government programs underestimate the costs of change management and the need for training and technology. Confusion reigns about responsibilities, but governments must ensure connectivity between health care providers and recognise that the benefits will accrue into the future. The National E-Health Transition Authority has developed national open-access standards, and its foundation projects and the National Broadband Network are now coming into place. To ensure the clinical relevance, utility, safety and acceptability of e-health systems, health professionals urgently need technical capacity and expert guidance.

Towards E-Health Interoperability: Challenges, Perspectives and Solutions

Healthcare needs to be more efficient and provide more services with the same or fewer resources. Our aging population and increased occurrences and survival with chronic diseases threaten to put a strain on our already overloaded healthcare system. When healthcare makes the news it is frequently bad news about prolonged waits in emergency wards, increased surgical wait times and patients unable to obtain basic medical services such as a family physician. The 2001 Institute of Medicine (IOM) study ‘Crossing the Quality Chasm a New Health Care System for the 21 century’ described the need for a healthcare system with high performing patient care teams that provide safe, effective, personalized patient care across different sites and services [1]. However that vision is challenging as our healthcare system is still largely built around individual tasks and information usage, which is clearly inappropriate for the level of integration our healthcare system needs to provide coordinated care across distributed settings. Although today one is, for example, able to access our banking information and withdraw money or pay bills from computers and kiosks around the world it is often difficult to access a patient’s healthcare data across different settings in the same city much less across a country. Thus a critical need for the healthcare system is interoperability, defined by the Healthcare Information and Management Systems Society as ‘the ability of health information systems to work together within and across organizational boundaries in order to advance the effective delivery of healthcare for individuals and communities.’[2]. Interoperability research has become a priority area with some countries having entire divisions of the healthcare system dedicated to interoperability. For example Australia’s national E-health transition authority (NEHTA) has the sole purpose of defining the interoperability standards for any future national health information system [3]. Similar efforts are under way in the United States where the Healthcare Information Technology Standards Panel is attempting to develop standards for local, regional and national health information networks [4]. Many of the efforts to introduce an interoperable health record in Canada have originated from Canada Health Infoway [5]. Emerging technologies such as Web 2.0 can serve as the architecture for an integrated healthcare system. The application of Web 2.0 in healthcare, designated as Health 2.0, has unlimited potential for reshaping the way that healthcare is delivered. Many of the recommendations from the IOM study involve coordination of services across different diseases, and settings, and the ability for patients, caregivers and medical professionals to collaborate and share data. Health 2.0 can help us achieve those recommendations. Further, an increased prevalence of chronic illness and the move towards proactive wellness rather than reactive treatment will change the way healthcare is managed. Health 2.0 applications can help transform patients from passive recipients to active participants in healthcare service delivery. Health 2.0 applications, services and tools have emerged along five themes: social networking, participation, apomediation, collaboration and openness [6]. The common business model in Health 2.0 applications is openness and sharing. For example Google [7] and Microsoft [8] and Telus [9] are proposing services to maintain personal electronic health records of consumers while allowing appropriate access as needed by physicians, clinics, and other health care providers. However there remain numerous issues including technical, social, legal and policy-based issues that must be resolved before Health 2.0 can realize its full potential. A particular challenge is interoperability for healthcare as interoperability has several different levels including technical, workflow, privacy and semantics. Much of the interoperability research to date has focused on terminology standards but we need to remember that interoperability includes other factors including workflow and communication [10]. Problems occur when the technical aspects of interoperability are implemented JOURNAL OF EMERGING TECHNOLOGIES IN WEB INTELLIGENCE, VOL. 1, NO. 2, NOVEMBER 2009 107

NEHTA Terminology Analysts.

The different backgrounds and work of four of NEHTA's Terminology Analysts are discussed. The National Clinical Terminology and Information Service (NCTIS), part of the National E-Health Transition Authority (NEHTA), was tasked by Australia's governments to create, maintain, and represent in a standardised form terminology content for health care domains (predominantly clinical). The NCTIS is developing software that will be able to record and interpret all clinical information about a patient. Forming the basis of this software is SNOMED CT. It will effectively form the data source of e-health, enabling clinicians to exchange their traditional paper-based records for a modern, electronic system. NEHTA employs a number of Terminology Analysts to undertake this work.

A New Era in Clinical Communications: A Report on the Past Year's Work at NEHTA.

Across Australia there is a groundswell of support for a better more connected healthcare system. More than 80 per cent of Australians are in favour of electronic health records and the sector is increasingly aware of the safety and quality benefits that e-health can deliver. On behalf of the governments of Australia, the National E-Health Transition Authority (NEHTA) is developing a national e-health infrastructure that will underpin the success of a connected healthcare system. This involves a body of work that includes clinical terminologies, unique healthcare identification and the development and recommendation of standards for the safe transmission and access of healthcare information. Read an update of NEHTA's work and progress in 2008.

NEHTA's Role in Australia's e-health Reform: An Update of Work to Date.

The National E-Health Transition Authority (NEHTA) has just completed the second year of a comprehensive work program that largely focused on the long-term view of e-health for Australia: the development of a national approach to Shared Electronic Health Records (SEHR). A national system of sharing electronic health records will improve the delivery of health services and lead to better patient outcomes. The NEHTA will present the business case for the SEHR to the Council of Australian Governments in early 2008. This article summarises the key outcomes towards establishing priority 'stepping-stones' that have been achieved in the last 12 months.

Lessons from the NHS National Programme for IT

The size of this commitment makes the NHS NationalProgramme for IT (NPfIT), delivered by the NHS Connecting forHealth (CfH) agency, of major international importance.NPfIT covers 330 acute hospitals and mental health trusts, andprimary and community care organisations across England (Scot-land, Wales and Northern Ireland have opted not to participate).At the core of the program is the “Spine”, a central link to a patientregister, electronic prescription service, messaging service, and asummary care record. A web-based booking system, Choose andBook, which allows patients to select or change appointmenttimes, is currently used for 12% of bookings. Radiology picturearchiving, electronic prescription transfer, email, and an NHS-widedirectory have been implemented, but electronic patient records, acommon user interface and secondary use of data are significantlydelayed.The NHS chose to procure systems centrally and implementthem locally. Procurements included NHS-wide systems (emailand Choose and Book), enterprise-wide agreements (eg, withMicrosoft), and five local service providers to implement theregional solutions. Local service providers are free to choose andchange subcontractors.Local systems must conform to national standards, as in Aus-tralia where all jurisdictions have agreed to use standards promul-gated by the National E-Health Transition Authority. Cleardifferences are our federal structure that allows each state its ownprocurement process, financial and regulatory framework, andcontrols, thus hindering the unified “big bang” approach possiblefor England.Once all costs of implementation and training are accounted for,the final budget for NPfIT could blow out to as much as £30billion.

The National E-Health Transition Authority (NEHTA)

The National E-Health Transition Authority (NEHTA)