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.

Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research

BACKGROUND: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. OBJECTIVE: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. METHOD: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. RESEARCH OUTCOMES: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. CONCLUSION: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.

Residential segregation, dividing walls and mental health: A population-based record linkage study

Background
Neighbourhood segregation has been described as a fundamental determinant of physical health, but literature on its effect on mental health is less clear. Whilst most previous research has relied on conceptualized measures of segregation, Northern Ireland is unique as it contains physical manifestations of segregation in the form of segregation barriers (or “peacelines”) which can be used to accurately identify residential segregation.
Methods
We used population-wide health record data on over 1.3 million individuals, to analyse the effect of residential segregation, measured by both the formal Dissimilarity Index and by proximity to a segregation barrier, on the likelihood of poor mental health.
Results
Using multi-level logistic regression models we found residential segregation measured by the Dissimilarity Index poses no additional risk to the likelihood of poor mental health after adjustment for area-level deprivation. However, residence in an area segregated by a “peaceline” increases the likelihood of antidepressant medication by 19% (OR=1.19, 95% CI: 1.14, 1.23) and anxiolytic medication by 39% (OR=1.39, 95% CI: 1.32, 1.48), even after adjustment for gender, age, conurbation, deprivation and crime.
Conclusions
Living in an area segregated by a ‘peaceline’ is detrimental to mental health suggesting segregated areas characterised by a heightened sense of ‘other’ pose a greater risk to mental health. The difference in results based on segregation measure highlights the importance of choice of measure when studying segregation.

The impact of usability on clinician acceptance of a health information system

The two longitudinal case studies that make up this dissertation sought to explain and predict the relationship between usability and clinician acceptance of a health information system. The overall aim of the research study was to determine what role usability plays in the acceptance or rejection of systems used by clinicians in a healthcare context. The focus was on the end users (the clinicians) rather than the views of the system designers and managers responsible for implementation and the clients of the clinicians. A mixed methods approach was adopted that drew on both qualitative and quantitative research methods. This study followed the implementation of a community health information system from early beginnings to its established practice. Users were drawn from different health service departments with distinctly different organisational cultures and attitudes to information and communication technology used in this context. This study provided evidence that a usability analysis in this context would not necessarily be valid when the users have prior reservations on acceptance. Investigation was made on the initial training and post-implementation support together with a study on the nature of the clinicians to determine factors that may influence their attitude. This research identified that acceptance of a system is not necessarily a measure of its quality, capability and usability, is influenced by the user’s attitude which is determined by outside factors, and the nature and quality of training. The need to recognise the limitations of the current methodologies for analysing usability and acceptance was explored to lay the foundations for further research.

The impact of health information technology on the quality of medical and health care : a systematic review

Objective: To systematically review the published evidence of the impact of health information technology (HIT) on the quality of medical and health care specifically clinicians’ adherence to evidence-based guidelines and the corresponding impact this had on patient clinical outcomes. In order to be as inclusive as possible the research examined literature discussing the use of health information technologies and systems in both medical care such as clinical and surgical, and other health care such as allied health and preventive services.----- Design: Systematic review----- Data Sources: Relevant literature was systematically searched on English language studies indexed in MEDLINE and CINAHL(1998 to 2008), Cochrane Library, PubMed, Database of Abstracts of Review of Effectiveness (DARE), Google scholar and other relevant electronic databases. A search for eligible studies (matching the inclusion criteria) was also performed by searching relevant conference proceedings available through internet and electronic databases, as well as using reference lists identified from cited papers.----- Selection criteria: Studies were included in the review if they examined the impact of Electronic Health Record (EHR), Computerised Provider Order-Entry (CPOE), or Decision Support System (DS); and if the primary outcomes of the studies were focused on the level of compliance with evidence-based guidelines among clinicians. Measures could be either changes in clinical processes resulting from a change of the providers’ behaviour or specific patient outcomes that demonstrated the effectiveness of a particular treatment given by providers. ----- Methods: Studies were reviewed and summarised in tabular and text form. Due to heterogeneity between studies, meta-analysis was not performed.----- Results: Out of 17 studies that assessed the impact of health information technology on health care practitioners’ performance, 14 studies revealed a positive improvement in relation to their compliance with evidence-based guidelines. The primary domain of improvement was evident from preventive care and drug ordering studies. Results from the studies that included an assessment for patient outcomes however, were insufficient to detect either clinically or statistically important improvements as only a small proportion of these studies found benefits. For instance, only 3 studies had shown positive improvement, while 5 studies revealed either no change or adverse outcomes.----- Conclusion: Although the number of included studies was relatively small for reaching a conclusive statement about the effectiveness of health information technologies and systems on clinical care, the results demonstrated consistency with other systematic reviews previously undertaken. Widescale use of HIT has been shown to increase clinician’s adherence to guidelines in this review. Therefore, it presents ongoing opportunities to maximise the uptake of research evidence into practice for health care organisations, policy makers and stakeholders.

A secure architecture for Australia’s index based e-health environment

This paper proposes a security architecture for the basic cross indexing systems emerging as foundational structures in current health information systems. In these systems unique identifiers are issued to healthcare providers and consumers. In most cases, such numbering schemes are national in scope and must therefore necessarily be used via an indexing system to identify records contained in pre-existing local, regional or national health information systems. Most large scale electronic health record systems envisage that such correlation between national healthcare identifiers and pre-existing identifiers will be performed by some centrally administered cross referencing, or index system. This paper is concerned with the security architecture for such indexing servers and the manner in which they interface with pre-existing health systems (including both workstations and servers). The paper proposes two required structures to achieve the goal of a national scale, and secure exchange of electronic health information, including: (a) the employment of high trust computer systems to perform an indexing function, and (b) the development and deployment of an appropriate high trust interface module, a Healthcare Interface Processor (HIP), to be integrated into the connected workstations or servers of healthcare service providers. This proposed architecture is specifically oriented toward requirements identified in the Connectivity Architecture for Australia’s e-health scheme as outlined by NEHTA and the national e-health strategy released by the Australian Health Ministers.

Privacy and trust management for electronic health records

Establishing a nationwide Electronic Health Record system has become a primary objective for many countries around the world, including Australia, in order to improve the quality of healthcare while at the same time decreasing its cost. Doing so will require federating the large number of patient data repositories currently in use throughout the country. However, implementation of EHR systems is being hindered by several obstacles, among them concerns about data privacy and trustworthiness. Current IT solutions fail to satisfy patients’ privacy desires and do not provide a trustworthiness measure for medical data. This thesis starts with the observation that existing EHR system proposals suer from six serious shortcomings that aect patients’ privacy and safety, and medical practitioners’ trust in EHR data: accuracy and privacy concerns over linking patients’ existing medical records; the inability of patients to have control over who accesses their private data; the inability to protect against inferences about patients’ sensitive data; the lack of a mechanism for evaluating the trustworthiness of medical data; and the failure of current healthcare workflow processes to capture and enforce patient’s privacy desires. Following an action research method, this thesis addresses the above shortcomings by firstly proposing an architecture for linking electronic medical records in an accurate and private way where patients are given control over what information can be revealed about them. This is accomplished by extending the structure and protocols introduced in federated identity management to link a patient’s EHR to his existing medical records by using pseudonym identifiers. Secondly, a privacy-aware access control model is developed to satisfy patients’ privacy requirements. The model is developed by integrating three standard access control models in a way that gives patients access control over their private data and ensures that legitimate uses of EHRs are not hindered. Thirdly, a probabilistic approach for detecting and restricting inference channels resulting from publicly-available medical data is developed to guard against indirect accesses to a patient’s private data. This approach is based upon a Bayesian network and the causal probabilistic relations that exist between medical data fields. The resulting definitions and algorithms show how an inference channel can be detected and restricted to satisfy patients’ expressed privacy goals. Fourthly, a medical data trustworthiness assessment model is developed to evaluate the quality of medical data by assessing the trustworthiness of its sources (e.g. a healthcare provider or medical practitioner). In this model, Beta and Dirichlet reputation systems are used to collect reputation scores about medical data sources and these are used to compute the trustworthiness of medical data via subjective logic. Finally, an extension is made to healthcare workflow management processes to capture and enforce patients’ privacy policies. This is accomplished by developing a conceptual model that introduces new workflow notions to make the workflow management system aware of a patient’s privacy requirements. These extensions are then implemented in the YAWL workflow management system.

Privacy oriented access control for electronic health records

Security and privacy in electronic health record systems have been hindering the growth of e-health systems since their emergence. The development of policies that satisfy the security and privacy requirements of different stakeholders in healthcare has proven to be difficult. But, these requirements have to be met if the systems developed are to succeed in achieving their intended goals. Access control is a fundamental security barrier for securing data in healthcare information systems. In this paper we present an access control model for electronic health records. We address patient privacy requirements, confidentiality of private information and the need for flexible access for health professionals for electronic health records. We carefully combine three existing access control models and present a novel access control model for EHRs which satisfies requirements of electronic health records.

Barriers to the adoption of health information technology

Information Technology (IT) is successfully applied in a diverse range of fields. Though, the field of Medical Informatics is more than three decades old, it shows a very slow progress compared to many other fields in which the application of IT is growing rapidly. The spending on IT in health care is shooting up but the road to successful use of IT in health care has not been easy. This paper discusses about the barriers to the successful adoption of information technology in clinical environments and outlines the different approaches used by various countries and organisations to tackle the issues successfully. Investing financial and other resources to overcome the barriers for successful adoption of HIT is highly important to realise the dream of a future healthcare system with each customer having secure, private Electronic Health Record (EHR) that is available whenever and wherever needed, enabling the highest degree of coordinated medical care based on the latest medical knowledge and evidence. Arguably, the paper reviews barriers to HIT from organisations’ alignment in respect to the leadership; with their stated values when accepting or willingness to consider the HIT as a determinant factor on their decision-making processes. However, the review concludes that there are many aspects of the organisational accountability and readiness to agree to the technology implementation.

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.

Sharing of clinical data in a maternity setting: How do paper hand-held records and electronic health records compare for completeness?

Background Historically, the paper hand-held record (PHR) has been used for sharing information between hospital clinicians, general practitioners and pregnant women in a maternity shared-care environment. Recently in alignment with a National e-health agenda, an electronic health record (EHR) was introduced at an Australian tertiary maternity service to replace the PHR for collection and transfer of data. The aim of this study was to examine and compare the completeness of clinical data collected in a PHR and an EHR. Methods We undertook a comparative cohort design study to determine differences in completeness between data collected from maternity records in two phases. Phase 1 data were collected from the PHR and Phase 2 data from the EHR. Records were compared for completeness of best practice variables collected The primary outcome was the presence of best practice variables and the secondary outcomes were the differences in individual variables between the records. Results Ninety-four percent of paper medical charts were available in Phase 1 and 100% of records from an obstetric database in Phase 2. No PHR or EHR had a complete dataset of best practice variables. The variables with significant improvement in completeness of data documented in the EHR, compared with the PHR, were urine culture, glucose tolerance test, nuchal screening, morphology scans, folic acid advice, tobacco smoking, illicit drug assessment and domestic violence assessment (p = 0.001). Additionally the documentation of immunisations (pertussis, hepatitis B, varicella, fluvax) were markedly improved in the EHR (p = 0.001). The variables of blood pressure, proteinuria, blood group, antibody, rubella and syphilis status, showed no significant differences in completeness of recording. Conclusion This is the first paper to report on the comparison of clinical data collected on a PHR and EHR in a maternity shared-care setting. The use of an EHR demonstrated significant improvements to the collection of best practice variables. Additionally, the data in an EHR were more available to relevant clinical staff with the appropriate log-in and more easily retrieved than from the PHR. This study contributes to an under-researched area of determining data quality collected in patient records.

Paper and electronic antenatal records: What do women and health care providers tell us about their use?

The antenatal paper hand-held record (PHR) has been used extensively in general practice (GP) shared-care management of pregnant women, but recently the antenatal electronic health record (EHR) was introduced. This study aimed to examine the experiences of women and health care providers who use the PHR and the EHR, and find out the relative role of these records in the integration of care. Purposive homogenous samples of women and health care providers were interviewed as users of the PHR in phase 1 and the EHR in phase 2 of the study. Qualitative data were collected via interview with women and GPs and focus groups held with hospital health care providers. Interviews were coded manually and analysed using qualitative content analysis. Fifteen women participated in phase 1 and 12 in phase 2. Seventeen GPs participated in phase 1 and 15 in phase 2. Five focus groups with hospital health care providers were conducted in each phase. Results were categorised into four themes: 1. Record purpose; 2. Perception of the record; 3. Content of the record, and; 4. Sharing information in the record. Both women and health care providers were familiar with the PHR, but identified that some information was missing or not utilised well, and reported underuse of the EHR. The study identified continued widespread use of the PHR and several issues concerning the use of the EHR. An improvement in the strategic implementation of the EHR is suggested as a mechanism to facilitate its wider adoption.

From maternity paper hand-held records to electronic health records: What do women tell us about their use?

The paper hand-held record (PHR) has been used extensively in general practice (GP) shared care management of pregnant women, and recently, the first Mater Shared Electronic Health Record (MSEHR) was introduced. The aim of this qualitative study was to examine women’s experiences using the records and the contribution of the records to integrate care. At the 36-week antenatal visit in a maternity tertiary centre clinic, women were identified as a user of either the PHR or the MSEHR and organised into Phase 1 and Phase 2 studies respectively. Fifteen women were interviewed in Phase 1 and 12 women in Phase 2. Semi-structured interviews were used for data collection, and analysed using qualitative content analysis. Four main themes were identified: (1) purpose of the record; (2) perceptions of the record; (3) content of the record, and; (4) sharing the record. Findings indicate that the PHR is a well-liked maternity tool. The findings also indicate there is under-usage of the MSEHR due to health-care providers failing to follow up and discuss the option of using the electronic health record option or if a woman has completed the log-in process. This paper adds to an already favourable body of knowledge about the use of the PHR. It is recommended that continued implementation of the MSEHR be undertaken to facilitate its use.

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.

Personal health records as sources of productivity evidence

Capturing data from various data repositories and integrating them for productivity improvements is common in modern business organisations. With the well-accepted concept of achieving positive gains through investment in employee health and wellness, organisations have started to capture both employee health and non-health data as Employer Sponsored electronic Personal Health Records (ESPHRs). However, non-health related data in ESPHRs has hardly been taken into consideration with outcomes such as employee productivity potentially being suited for further validation and stimulation of ESPHR usage. Here we analyse selected employee demographic information (age, gender, marital status, and job grade) and health-related outcomes (absenteeism and presenteeism) of employees for evidence-based decision making. Our study considered demographic and health-related outcomes of 700 employees. Surprisingly, the analysis shows that employees with high sick leave rates are also high performers. A factor analysis shows 92% of the variance in the data can be explained by three factors, with the job grade capable of explaining 62% of the variance. Work responsibilities may drive employees to maintain high work performance despite signs of sickness, so ESPHRs should focus attention on high performers. This finding suggests new ways of extracting value from ESPHRs to support organisational health and wellness management to help assure sustainability in organisational productivity.