Developing an integrated clinical decision support system for the early identification and management of kidney disease-building cross-sectoral partnerships.

BACKGROUND: The burden of chronic conditions is growing in Australia with people in remote areas experiencing high rates of disease, especially kidney disease. Health care in remote areas of the Northern Territory (NT) is complicated by a mobile population, high staff turnover, poor communication between health services and complex comorbid health conditions requiring multidisciplinary care. AIM: This paper aims to describe the collaborative process between research, government and non-government health services to develop an integrated clinical decision support system to improve patient care. METHODS: Building on established partnerships in the government and Aboriginal Community-Controlled Health Service (ACCHS) sectors, we developed a novel digital clinical decision support system for people at risk of developing kidney disease (due to hypertension, diabetes, cardiovascular disease) or with kidney disease. A cross-organisational and multidisciplinary Steering Committee has overseen the design, development and implementation stages. Further, the system's design and functionality were strongly informed by experts (Clinical Reference Group and Technical Working Group), health service providers, and end-user feedback through a formative evaluation. RESULTS: We established data sharing agreements with 11 ACCHS to link patient level data with 56 government primary health services and six hospitals. Electronic Health Record (EHR) data, based on agreed criteria, is automatically and securely transferred from 15 existing EHR platforms. Through clinician-determined algorithms, the system assists clinicians to diagnose, monitor and provide guideline-based care for individuals, as well as service-level risk stratification and alerts for clinically significant events. CONCLUSION: Disconnected health services and separate EHRs result in information gaps and a health and safety risk, particularly for patients who access multiple health services. However, barriers to clinical data sharing between health services still exist. In this first phase, we report how robust partnerships and effective governance processes can overcome these barriers to support clinical decision making and contribute to holistic care.

Preventing data disasters: helpful tips on data backup and storage options.

Ask vendors about data backup and recovery options when evaluating electronic health record systems. Weigh different solutions for recovery point objectives and recovery time objectives against your practice owners' risk tolerance as well as the budget.

E-health records and future healthcare.

This chapter gives an educational overview of: * Data collected, stored in health records and used for multiple purposes * Electronic health records and how these are likely to influence our future * Personal health records * Clinical systems and their relationship to national data collections * Potential future use of new technologies.

Sustainable clinical knowledge management: an archetype development life cycle.

This chapter gives an educational overview of: 1. The significance of having a formal ontology of health care data 2. How openEHR has used an ontological approach to designing an electronic health record 3. The phases of archetype development and key steps in the process 4. The openEHR architecture and integrated development environment.

Archetype-based knowledge management for semantic interoperability of electronic health records.

Formal modeling of clinical content that can be made available internationally is one of the most promising pathways to semantic interoperability of health information. Drawing on the extensive experience from openEHR archetype research and implementation work, we present the latest research and development in this area to improve semantic interoperability of Electronic Health Records (EHRs) using openEHR (ISO 13606) archetypes. Archetypes as the formal definition of clinical content need to be of high technical and clinical quality. We will start with a brief introduction of the openEHR architecture followed by presentations on specific topics related to the management of a wide range of clinical knowledge artefacts. We will describe a web-based review process for archetypes that enables international involvement and ensures that released archetypes are technically and clinically correct. Tools for validation of archetypes will be presented, along with templates and compliance templates. All this in combination enables the openEHR computing platform to be the foundation for safely sharing the information clinicians need, using this information within computerized clinical guidelines, for decision support as well as migrating legacy data.

Engaging clinicians in clinical content: herding cats or piece of cake?

It is essential that clinicians are able to contribute to the development of clinical content for electronic health records. Clinicians are able to participate meaningfully when the technical focus on the process and the clinical models are reduced or removed. In the openEHR approach - from the original design specification through to the clinical modelling tools - clinicians feature as the primary drivers of clinical content models. As tooling develops and matures to support authoring, reviewing and publishing of openEHR knowledge artefacts, clinicians are increasingly able to be involved - resulting in significant contributions to the development of standardized clinical content models which will support quality of care for their patients.

EHR query language (EQL)--a query language for archetype-based health records.

OpenEHR specifications have been developed to standardise the representation of an international electronic health record (EHR). The language used for querying EHR data is not as yet part of the specification. To fill in this gap, Ocean Informatics has developed a query language currently known as EHR Query Language (EQL), a declarative language supporting queries on EHR data. EQL is neutral to EHR systems, programming languages and system environments and depends only on the openEHR archetype model and semantics. Thus, in principle, EQL can be used in any archetype-based computational context. In the EHR context described here, particular queries mention concepts from the openEHR EHR Reference Model (RM). EQL can be used as a common query language for disparate archetype-based applications. The use of a common RM, archetypes, and a companion query language, such as EQL, semantic interoperability of EHR information is much closer. This paper introduces the EQL syntax and provides example clinical queries to illustrate the syntax. Finally, current implementations and future directions are outlined.

An ontology-based model of clinical information.

In this paper we describe a model of clinical information designed to make health information systems properly interoperable and safely computable. The model is a response to a number of categories of requirements, ranging from the semantic to the performance of software at runtime. We argue that the starting point of a successful model must be an ontological analysis of the process of clinical care delivery, seen as a scientific problem-solving process. From this approach we develop a classification of types of clinical information called the Clinical Investigator Record (CIR) ontology.

Towards semantic interoperability for electronic health records.

OBJECTIVES: In the field of open electronic health records (EHRs), openEHR as an archetype-based approach is being increasingly recognised. It is the objective of this paper to shortly describe this approach, and to analyse how openEHR archetypes impact on health professionals and semantic interoperability. METHODS: Analysis of current approaches to EHR systems, terminology and standards developments. In addition to literature reviews, we organised face-to-face and additional telephone interviews and tele-conferences with members of relevant organisations and committees. RESULTS: The openEHR archetypes approach enables syntactic interoperability and semantic interpretability -- both important prerequisites for semantic interoperability. Archetypes enable the formal definition of clinical content by clinicians. To enable comprehensive semantic interoperability, the development and maintenance of archetypes needs to be coordinated internationally and across health professions. Domain knowledge governance comprises a set of processes that enable the creation, development, organisation, sharing, dissemination, use and continuous maintenance of archetypes. It needs to be supported by information technology. CONCLUSIONS: To enable EHRs, semantic interoperability is essential. The openEHR archetypes approach enables syntactic interoperability and semantic interpretability. However, without coordinated archetype development and maintenance, 'rank growth' of archetypes would jeopardize semantic interoperability. We therefore believe that openEHR archetypes and domain knowledge governance together create the knowledge environment required to adopt EHRs.

Towards automatically generating graphical user interfaces from openEHR archetypes.

One of the main challenges in the field of Electronic Health Records (EHRs) is semantic interoperability. To utilise the full potential of interoperable EHR systems they have to be accepted by their users, the health care providers. Good Graphical User Interfaces (GUIs) that support customisation and data validation play a decisive role for user acceptance and data quality. This study investigates the use of openEHR archetypes to automatically generate coherent, customizable, data-validating GUIs. Using the Mozilla XML User Interface Language (XUL) a series of prototypes has been developed. The results show that the automatic generation of GUIs from openEHR archetypes is feasible in principle. Although XUL revealed some problems, the advantages of XML-based GUI languages are evident.

Specialist outreach to isolated and disadvantaged communities: a population-based study.

BACKGROUND: Visiting-specialist clinics (specialist outreach) have the potential to overcome some of the substantial access barriers faced by disadvantaged rural, remote, and Indigenous communities, but the effectiveness of outreach clinics has not been assessed outside urban and non-disadvantaged settings. We aimed to assess the effects of outreach clinics on access, referral patterns, and care outcomes in remote communities in Australia. METHODS: We undertook a population-based observational study of regular surgical, ophthalmological, gynaecological, and ear, nose, and throat outreach visits, compared with hospital clinics alone, on access, referral practices, and outcomes for the populations of three remote Indigenous communities in northern Australia for 11 years. We assessed all new non-emergency potential specialist surgical cases who presented initially between Jan 1, 1990, and Jan 1, 2001. The effects of outreach clinics on the proportion of patients referred, the time from referral to initial specialist consultation, and the rates of community-based and hospital-based procedures were analysed using logic regression and Cox proportional hazard models. FINDINGS: 2339 new surgical problems presented in 2368 people between 1990 and 2001. Outreach improved the rate of referral completion (adjusted hazard ratio 1.41, 95% CI 1.07-1.86) and the risk of timely completion according to the urgency of referral (adjusted relative risk 1.30, 1.05-1.53). Outreach had no significant effect on initiation of elective referrals, but there were 156 opportunistic presentations on outreach clinic days. Specialist investigations and procedures in community clinics removed the need for many patients to travel to hospital, and outreach consultations were associated with a reduced rate of procedures that needed hospital admission (adjusted hazard ratio 0.67, 0.43-1.03). INTERPRETATION: Specialist outreach visits to remote disadvantaged Indigenous communities in Australia improve access to specialist consultations and procedures without increasing elective referrals or demands for hospital inpatient services.

The openEHR Foundation.

The openEHR Foundation is an independent, not-for-profit organisation and community, facilitating the creation and sharing of health records by consumers and clinicians via open-source, standards-based implementations. It was formed as a union of ten-year international R&D efforts in specifying the requirements, information models and implementation of comprehensive and ethico-legally sound electronic health record systems. Between 2000 and 2004 it has grown to having an on-line membership of over 300, published a wide range of EHR information viewpoint specifications. Several groups have now begun collaborative software development, within an open source framework. This chapter summarises the formation of openEHR, its research underpinning, practical demonstrators, the principle design concepts, and the roles openEHR members are playing in international standards.

Nursing constraint models for electronic health records: a vision for domain knowledge governance.

Various forms of electronic health records (EHRs) are currently being introduced in several countries. Nurses are primary stakeholders and need to ensure that their information and knowledge needs are being met by such systems information sharing between health care providers to enable them to improve the quality and efficiency of health care service delivery for all subjects of care. The latest international EHR standards have adopted the openEHR approach of two-level modelling. The first level is a stable information model determining structure, while the second level consists of constraint models or 'archetypes' that reflect the specifications or clinician rules for how clinical information needs to be represented to enable unambiguous data sharing. The current state of play in terms of international health informatics standards development activities is providing the nursing profession with a unique opportunity and challenge. Much work has been undertaken internationally in the area of nursing terminologies and evidence-based practice. This paper argues that to make the most of these emerging technologies and EHRs we must now concentrate on developing a process to identify, document, implement, manage and govern our nursing domain knowledge as well as contribute to the development of relevant international standards. It is argued that one comprehensive nursing terminology, such as the ICNP or SNOMED CT is simply too complex and too difficult to maintain. As the openEHR archetype approach does not rely heavily on big standardised terminologies, it offers more flexibility during standardisation of clinical concepts and it ensures open, future-proof electronic health records. We conclude that it is highly desirable for the nursing profession to adopt this openEHR approach as a means of documenting and governing the nursing profession's domain knowledge. It is essential for the nursing profession to develop its domain knowledge constraint models (archetypes) collaboratively in an international context.

Village birth attendants in Papua New Guinea.

AIM: To describe the care delivered by village birth attendants in a remote area of Papua New Guinea. METHOD: A qualitative study using semistructured interviews with 56 voluntary village birth attendants. RESULTS: Village birth attendants supervise and assist women with labour and delivery. Many have additional roles in their community. Most are motivated by a desire to help the women in their community. Common difficulties encountered include obstetric and logistical problems. The most common reason for ceasing work is family pressure or lack of support. DISCUSSION: Village birth attendants may contribute toward an improvement in maternal morbidity and mortality in remote areas of Papua New Guinea.

Pruritus ani.

BACKGROUND: Pruritus ani is a common presenting problem in general practice, one that is particularly distressing to patients. However, there is little available research on which to base management OBJECTIVE: This article discusses the causes and management of this distressing symptom based on thecurrent available evidence. DISCUSSION: Perianal itch probably arises from localised inflammation. This may be the result of anorectal disease, skin disorders, excessive cleaning, application of local irritants or other causes. In children, perianal itch may be caused by intestinal hermetic Infection such as pinworm. Whatever the initial cause, the problem may at times become chronic, with scratching inflaming the area and more itching resulting. Avoiding trauma from excess washing, toilet paper and topical agents is important. Treatments likely to be effective are emollients such as sorbolene, a short course of topical hydrocortisone cream and capsaicin cream.

General practice education in Australia. Current issues.

General practice education is rapidly changing. Medical students now have exposure to general practice at most year levels, vocational training has been opened to competition, and continuing professional development is a mandatory requirement for maintenance of Health Insurance Commission recognition, and increasingly for state registration. This article outlines the foundations for, and challenge to, building a framework for quality general practice education in Australia.

Linking guidelines to Electronic Health Record design for improved chronic disease management.

The promise of electronic decision support to promote evidence based practice remains elusive in the context of chronic disease management. We examine the problem of achieving a close relationship of Electronic Health Record (EHR) content to other components of a clinical information system (guidelines, decision support and workflow), particularly linking the decisions made by providers back to the guidelines. We use the openEHR architecture, which allows extension of a core Reference Model via Archetypes to refine the detailed information recording options for specific classes of encounter. We illustrate the use of openEHR for tracking the relationship of a series of clinical encounters to a guideline via a case study of guideline-compliant treatment of hypertension in diabetes. This case study shows the contribution guideline content can have on problem-specific EHR structure and demonstrates the potential for a constructive interaction of electronic decision support and the EHR.

Risks to feet in the top end: outcomes of diabetic foot complications.

BACKGROUND: The foot complications of diabetes are severe, disabling, costly and common in the Northern Territory. An understanding of the pathogenesis, the disease spectrum and treatment efficacy, however, is poor. The patterns of disease are documented in the present study; factors associated with good and poor outcomes are identified; and improved management strategies are proposed. METHODS: All patients presenting to the High Risk Foot Service at Royal Darwin Hospital between March 1997 and March 2000 were included in the present study, and details regarding the status of their feet, their demographics, their treatment and their outcomes were recorded prospectively. Logistic regression analysis was undertaken to determine associations between factors of interest and outcomes of healing and amputation. RESULTS: One hundred and twenty-six patients were recorded, 41% of whom had neuropathic ulcers and 63% of whom had severe disease at presentation. Two types of diabetic foot pathology were recognized that are not usually classified: acute injury without neuropathy (10%) and deep soft tissue infection alone (9%).Thirty-seven percent and 23% of patients required minor and major amputations, respectively. The total number of hospital bed-days was 5813. Total contact casting was associated with good healing rates in 16 patients. Major amputation was associated with ischaemia, severe disease at presentation and increasing age. CONCLUSIONS: Patterns of diabetic foot disease which are not commonly recognized are described in the present study; the severity and cost of the problem are documented; and some factors which lead to poor outcome, such as late presentation, are identified. Attention should be paid, through a multidisciplinary team, to timely referral from primary care, patient education, total contact casts and appropriate revascularization.