Using a public key registry for improved trust and scalability in national E-health systems

An increasing number of countries are faced with an aging population increasingly needing healthcare services. For any e-health information system, the need for increased trust by such clients with potentially little knowledge of any security scheme involved is paramount. In addition notable scalability of any system has become a critical aspect of system design, development and ongoing management. Meanwhile cryptographic systems provide the security provisions needed for confidentiality, authentication, integrity and non-repudiation. Cryptographic key management, however, must be secure, yet efficient and effective in developing an attitude of trust in system users. Digital certificate-based Public Key Infrastructure has long been the technology of choice or availability for information security/assurance; however, there appears to be a notable lack of successful implementations and deployments globally. Moreover, recent issues with associated Certificate Authority security have damaged trust in these schemes. This paper proposes the adoption of a centralised public key registry structure, a non-certificate based scheme, for large scale e-health information systems. The proposed structure removes complex certificate management, revocation and a complex certificate validation structure while maintaining overall system security. Moreover, the registry concept may be easier for both healthcare professionals and patients to understand and trust.

De-Identification of health records using Anonym: Effectiveness and robustness across datasets

Objective Evaluate the effectiveness and robustness of Anonym, a tool for de-identifying free-text health records based on conditional random fields classifiers informed by linguistic and lexical features, as well as features extracted by pattern matching techniques. De-identification of personal health information in electronic health records is essential for the sharing and secondary usage of clinical data. De-identification tools that adapt to different sources of clinical data are attractive as they would require minimal intervention to guarantee high effectiveness. Methods and Materials The effectiveness and robustness of Anonym are evaluated across multiple datasets, including the widely adopted Integrating Biology and the Bedside (i2b2) dataset, used for evaluation in a de-identification challenge. The datasets used here vary in type of health records, source of data, and their quality, with one of the datasets containing optical character recognition errors. Results Anonym identifies and removes up to 96.6% of personal health identifiers (recall) with a precision of up to 98.2% on the i2b2 dataset, outperforming the best system proposed in the i2b2 challenge. The effectiveness of Anonym across datasets is found to depend on the amount of information available for training. Conclusion Findings show that Anonym compares to the best approach from the 2006 i2b2 shared task. It is easy to retrain Anonym with new datasets; if retrained, the system is robust to variations of training size, data type and quality in presence of sufficient training data.

eHealth-as-a-Service (eHaaS) : towards universal stakeholder engagement

With the introduction of the Personally Controlled Health Record (PCEHR), the Australian public is being asked to accept greater responsibility for their healthcare by taking an active role in the management of personal health information. Although well designed, constructed and intentioned, policy and privacy concerns have resulted in an eHealth model that may impact future health sharing requirements. Hence, as a case study for a consumer eHealth initative in the Australian context, eHealth-as-a-Service (eHaaS) serves as a disruptive step in in the aggregation and transformation of health information for use as real-world knowledge. The strategic value of extending the community Health Record Bank (HRB) model lies in the ability to automatically draw on a multitude of relevant data repositories and sources to create a single source of the truth and to engage market forces to create financial sustainability. The opportunity to transform the beleaguered Australian PCEHR into a realisable and sustainable technology consumption model for patient safety is explored. Moreover, the current clerical focus of healthcare practitioners acting in the role of de facto record keepers is renegotiated to establish a shared knowledge creation landscape of action for safer patient interventions. To achieve this potential however requires a platform that will facilitate efficient and trusted unification of all health information available in real-time across the continuum of care. eHaaS provides a sustainable environment and encouragement to realise this potential.

eHealth-as-a-Service (eHaaS) : the industrialisation of health informatics, a practical approach

With the introduction of the Personally Controlled Health Record (PCEHR), the Australian public is being asked to accept greater responsibility for their healthcare. Although well designed, constructed and intentioned, policy and privacy concerns have resulted in an eHealth model that may impact future health information sharing requirements. Thus an opportunity to transform the beleaguered Australian PCEHR into a sustainable on-demand technology consumption model for patient safety must be explored further. Moreover, the current clerical focus of healthcare practitioners must be renegotiated to establish a shared knowledge creation landscape of action for safer patient interventions. To achieve this potential however requires a platform that will facilitate efficient and trusted unification of all health information available in real-time across the continuum of care. As a conceptual paper, the goal of the authors is to deliver insights into the antecedents of usage influencing superior patient outcomes within an eHealth-as-a-Service framework. To achieve this, the paper attempts to distil key concepts and identify common themes drawn from a preliminary literature review of eHealth and cloud computing concepts, specifically cloud service orchestration to establish a conceptual framework and a research agenda. Initial findings support the authors’ view that an eHealth-as-a-Service (eHaaS) construct will serve as a disruptive paradigm shift in the aggregation and transformation of health information for use as real-world knowledge in patient care scenarios. Moreover, the strategic value of extending the community Health Record Bank (HRB) model lies in the ability to automatically draw on a multitude of relevant data repositories and sources to create a single source of practice based evidence and to engage market forces to create financial sustainability.

Clinical data warehousing : a business analytics approach for managing health data

Heterogeneous health data is a critical issue when managing health information for quality decision making processes. In this paper we examine the efficient aggregation of lifestyle information through a data warehousing architecture lens. We present a proof of concept for a clinical data warehouse architecture that enables evidence based decision making processes by integrating and organising disparate data silos in support of healthcare services improvement paradigms.

Portal-based support for mental health research

This paper describes experiences with the use of the Globus toolkit and related technologies for development of a secure portal that allows nationally-distributed Australian researchers to share data and application programs. The portal allows researchers to access infrastructure that will be used to enhance understanding of the causes of schizophrenia and advance its treatment, and aims to provide access to a resource that can expand into the world’s largest on-line collaborative mental health research facility. Since access to patient data is controlled by local ethics approvals, the portal must transparently both provide and deny access to patient data in accordance with the fine-grained access permissions afforded individual researchers. Interestingly, the access protocols are able to provide researchers with hints about currently inaccessible data that may be of interest to them, providing them the impetus to gain further access permissions.

Social interaction and the role of empathy in information and knowledge management

This article provides a general review of the literature on the nature and role of empathy in social interaction for information professionals working in a variety of information and knowledge environments. Relational agency theory (Edwards, 2005) is used asa framework to re-conceptualize education for empathic social interaction between information professionals and their clients. Past, present and future issues relevant to empathic interaction in information and knowledge management are discussed in the context of three shifts identified from the literature: (a) the continued increase in communication channels, both physical and virtual, for reference, information and re-search services, (b) the transition from the information age to the conceptual age and(c) the growing need for understanding of the affective paradigm in the information and knowledge professions. Findings from the literature review on the relationships between empathy and information behavior, social networking, knowledge management and information and knowledge services are presented. Findings are discussed in relation to the development of guidelines for the affective education and training of information and knowledge professionals and the potential use of virtual learning software such as Second Life in developing empathic communication skills

The Global Protection of Personal Health Data

The workshop is an activity of the IMIA Working Group ‘Security in Health Information Systems’ (SiHIS). It is focused to the growing global problem: how to protect personal health data in today’s global eHealth and digital health environment. It will review available trust building mechanisms, security measures and privacy policies. Technology alone does not solve this complex problem and current protection policies and legislation are considered woefully inadequate. Among other trust building tools, certification and accreditation mechanisms are dis-cussed in detail and the workshop will determine their acceptance and quality. The need for further research and international collective action are discussed. This workshop provides an opportunity to address a critical growing problem and make pragmatic proposals for sustainable and effective solutions for global eHealth and digital health.

The reach and rationale for community health fairs

Latinos living in the USA account for one third of the uninsured population and face numerous cultural, linguistic, and financial barriers to accessing healthcare services. Community health fairs have developed to address the unmet need for no- and low-cost services that target prevention and education among underserved communities. The current research describes an ongoing effort in a community in Southern California and examines the barriers to health care among participants registering to receive free breast health screenings, one of the major services offered at a 2010 health fair. A total of 186 adult Latina women completed a brief questionnaire assessing their healthcare utilization and self-reported barriers to engaging in preventive and screening services. Approximately two thirds of the participants reported never receiving or having more than 2 years passing since receiving a preventive health check-up. Participants identified cost (64.5 %) and knowledge of locations for services (52.3 %) as the primary barriers to engaging in routine healthcare services. Engaging with health professionals represents a leading way in which adults obtain health information; health fairs offering cancer health screenings represent a culturally appropriate venue for increased cancer health equity. Implications of the current research for future health fairs and their role in community cancer education are discussed.

The design and implementation of an Information Accountability Framework for eHealth systems

This tutorial primarily focuses on the implementation of Information Accountability (IA) protocols defined in an Information Accountability Framework (IAF) in eHealth systems. Concerns over the security and privacy of patient information are one of the biggest hindrances to sharing health information and the wide adoption of eHealth systems. At present, there are competing requirements between healthcare consumers' (i.e. patients) requirements and healthcare professionals' (HCP) requirements. While consumers want control over their information, healthcare professionals want access to as much information as required in order to make well-informed decisions and provide quality care. This conflict is evident in the review of Australia's PCEHR system and in recent studies of patient control of access to their eHealth information. In order to balance these requirements, the use of an Information Accountability Framework devised for eHealth systems has been proposed. Through the use of IA protocols, so-called Accountable-eHealth systems (AeH) create an eHealth environment where health information is available to the right person at the right time without rigid barriers whilst empowering the consumers with information control and transparency. In this half-day tutorial, we will discuss and describe the technical challenges surrounding the implementation of the IAF protocols into existing eHealth systems and demonstrate their use. The functionality of the protocols and AeH systems will be demonstrated, and an example of the implementation of the IAF protocols into an existing eHealth system will be presented and discussed.

Response to: Electronic health records and healthcare identifiers : legislation discussion paper

Public submission # 029 to a Australian federal parliamentary committee considering proposed legislative changes to the Commonwealth's Healthcare Identifiers Act 2010 and the Personally Controlled Electronic Health Records Act 2012.

Submission to: Strategic Review of Health and Medical Research (Australia) otherwise known as the McKeon Review

Public submission # 247 to the McKeon Review. The submission addresses the terms of reference on: How can we optimise translation of health and medical research into better health and wellbeing? (Terms of Reference 4, 8, 9, 10 and 11)

Chronicling the patient journey: Co-creating value with digital health ecosystems

With the introduction of the PCEHR (Personally Controlled Electronic Health Record), the Australian public is being asked to accept greater responsibility for the management of their health information. However, the implementation of the PCEHR has occasioned poor adoption rates underscored by criticism from stakeholders with concerns about transparency, accountability, privacy, confidentiality, governance, and limited capabilities. This study adopts an ethnographic lens to observe how information is created and used during the patient journey and the social factors impacting on the adoption of the PCEHR at the micro-level in order to develop a conceptual model that will encourage the sharing of patient information within the cycle of care. Objective: This study aims to firstly, establish a basic understanding of healthcare professional attitudes toward a national platform for sharing patient summary information in the form of a PCEHR. Secondly, the studies aims to map the flow of patient related information as it traverses a patient’s personal cycle of care. Thus, an ethnographic approach was used to bring a “real world” lens to information flow in a series of case studies in the Australian healthcare system to discover themes and issues that are important from the patient’s perspective. Design: Qualitative study utilising ethnographic case studies. Setting: Case studies were conducted at primary and allied healthcare professionals located in Brisbane Queensland between October 2013 and July 2014. Results: In the first dimension, it was identified that healthcare professionals’ concerns about trust and medico-legal issues related to patient control and information quality, and the lack of clinical value available with the PCEHR emerged as significant barriers to use. The second dimension of the study which attempted to map patient information flow identified information quality issues, clinical workflow inefficiencies and interoperability misconceptions resulting in duplication of effort, unnecessary manual processes, data quality and integrity issues and an over reliance on the understanding and communication skills of the patient. Conclusion: Opportunities for process efficiencies, improved data quality and increased patient safety emerge with the adoption of an appropriate information sharing platform. More importantly, large scale eHealth initiatives must be aligned with the value proposition of individual stakeholders in order to achieve widespread adoption. Leveraging an Australian national eHealth infrastructure and the PCEHR we offer a practical example of a service driven digital ecosystem suitable for co-creating value in healthcare.

Infant product-related injuries: comparing specialised injury surveillance and routine emergency department data

- Objective To explore the potential for using a basic text search of routine emergency department data to identify product-related injury in infants and to compare the patterns from routine ED data and specialised injury surveillance data. - Methods Data was sourced from the Emergency Department Information System (EDIS) and the Queensland Injury Surveillance Unit (QISU) for all injured infants between 2009 and 2011. A basic text search was developed to identify the top five infant products in QISU. Sensitivity, specificity, and positive predictive value were calculated and a refined search was used with EDIS. Results were manually reviewed to assess validity. Descriptive analysis was conducted to examine patterns between datasets. - Results The basic text search for all products showed high sensitivity and specificity, and most searches showed high positive predictive value. EDIS patterns were similar to QISU patterns with strikingly similar month-of-age injury peaks, admission proportions and types of injuries. - Conclusions This study demonstrated a capacity to identify a sample of valid cases of product-related injuries for specified products using simple text searching of routine ED data. - Implications As the capacity for large datasets grows and the capability to reliably mine text improves, opportunities for expanded sources of injury surveillance data increase. This will ultimately assist stakeholders such as consumer product safety regulators and child safety advocates to appropriately target prevention initiatives.

Truckies and workplace health promotion: Targeting a hard-to-reach group

- Introduction Research identifies truck drivers as being at high risk of chronic disease. For most truck drivers their workplace is their vehicle. Truck drivers’ health is impacted by the limitations of this unique working environment, including reduced opportunities for physical activity and the intake of healthy foods. Workplaces are widely recognised as effective platforms for health promotion. However, the effectiveness of traditional and contemporary health promotion interventions in truck drivers’ novel workplace is unknown. - Methods This project worked with six transport industry workplaces in Queensland, Australia over a two-year period. Researchers used Participatory Action Research (PAR) processes to engage truck drivers and workplace managers in the implementation and evaluation of six workplace health promotion interventions. These interventions were designed to support truck drivers to increase their physical activity and access to healthy foods at work. They included traditional health promotion interventions such as a free fruit initiative, a ten thousand steps challenge, personal health messages and workplace posters, and a contemporary social media intervention. Participants were engaged via focus groups, interviews and mixed-methods surveys. - Results The project achieved positive changes in truck drivers’ health knowledge and health behaviours, particularly related to nutrition. There were positive changes in truck drivers’ self-reported health rating, body mass index (BMI) and readiness to make health-related lifestyle changes. There were also positive changes in truck drivers reporting their workplace as a key source of health information. These changes were underpinned by a positive shift in the culture of participating workplaces. Truck drivers’ perceptions of their workplace valuing, encouraging, modelling and facilitating healthy nutrition and physical activity behaviours improved. PAR processes enabled researchers to develop relationships with workplace managers, contextualise interventions and deliver rigorous outcomes. Despite the novelty of truck drivers’ mobile workplace, traditional health promotion interventions were more effective than contemporary ones. - Conclusion In this workplace health promotion project targeting a ‘hard-to-reach’ group of truck drivers, a combination of well-designed traditional workplace interventions and the PAR process resulted in positive health outcomes.