General Practice - Research Publications

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    Australians' views on personal genomic testing: focus group findings from the Genioz study
    Metcalfe, SA ; Hickerton, C ; Savard, J ; Terrill, B ; Turbitt, E ; Gaff, C ; Gray, K ; Middleton, A ; Wilson, B ; Newson, AJ (NATURE PUBLISHING GROUP, 2018-08-01)
    Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what "personal genomics" might entail. Very few had heard of the term "direct-to-consumer" testing, which has implications for organisations developing information to support individuals in their decision-making. Participants' understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.
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    Person-Generated Health Data in Simulated Rehabilitation Using Kinect for Stroke: Literature Review.
    Dimaguila, GL ; Gray, K ; Merolli, M (JMIR Publications Inc., 2018-05-08)
    BACKGROUND: Person- or patient-generated health data (PGHD) are health, wellness, and clinical data that people generate, record, and analyze for themselves. There is potential for PGHD to improve the efficiency and effectiveness of simulated rehabilitation technologies for stroke. Simulated rehabilitation is a type of telerehabilitation that uses computer technologies and interfaces to allow the real-time simulation of rehabilitation activities or a rehabilitation environment. A leading technology for simulated rehabilitation is Microsoft's Kinect, a video-based technology that uses infrared to track a user's body movements. OBJECTIVE: This review attempts to understand to what extent Kinect-based stroke rehabilitation systems (K-SRS) have used PGHD and to what benefit. METHODS: The review is conducted in two parts. In part 1, aspects of relevance for PGHD were searched for in existing systematic reviews on K-SRS. The following databases were searched: IEEE Xplore, Association of Computing Machinery Digital Library, PubMed, Biomed Central, Cochrane Library, and Campbell Collaboration. In part 2, original research papers that presented or used K-SRS were reviewed in terms of (1) types of PGHD, (2) patient access to PGHD, (3) PGHD use, and (4) effects of PGHD use. The search was conducted in the same databases as part 1 except Cochrane and Campbell Collaboration. Reference lists on K-SRS of the reviews found in part 1 were also included in the search for part 2. There was no date restriction. The search was closed in June 2017. The quality of the papers was not assessed, as it was not deemed critical to understanding PGHD access and use in studies that used K-SRS. RESULTS: In part 1, 192 papers were identified, and after assessment only 3 papers were included. Part 1 showed that previous reviews focused on technical effectiveness of K-SRS with some attention on clinical effectiveness. None of those reviews reported on home-based implementation or PGHD use. In part 2, 163 papers were identified and after assessment, 41 papers were included. Part 2 showed that there is a gap in understanding how PGHD use may affect patients using K-SRS and a lack of patient participation in the design of such systems. CONCLUSIONS: This paper calls specifically for further studies of K-SRS-and for studies of technologies that allow patients to generate their own health data in general-to pay more attention to how patients' own use of their data may influence their care processes and outcomes. Future studies that trial the effectiveness of K-SRS outside the clinic should also explore how patients and carers use PGHD in home rehabilitation programs.
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    Patient-generated health data management and quality challenges in remote patient monitoring
    Abdolkhani, R ; Gray, K ; Borda, A ; DeSouza, R (OXFORD UNIV PRESS, 2019-12-01)
    BACKGROUND: Patient-Generated Health Data (PGHD) in remote monitoring programs is a promising source of precise, personalized data, encouraged by expanding growth in the health technologies market. However, PGHD utilization in clinical settings is low. One of the critical challenges that impedes confident clinical use of PGHD is that these data are not managed according to any recognized approach for data quality assurance. OBJECTIVE: This article aims to identify the PGHD management and quality challenges that such an approach must address, as these are expressed by key PGHD stakeholder groups. MATERIALS AND METHODS: In-depth interviews were conducted with 20 experts who have experience in the use of PGHD in remote patient monitoring, including: healthcare providers, health information professionals within clinical settings, and commercial providers of remote monitoring solutions. Participants were asked to describe PGHD management processes in the remote monitoring programs in which they are involved, and to express their perspectives on PGHD quality challenges during the data management stages. RESULTS: The remote monitoring programs in the study did not follow clear PGHD management or quality assurance approach. Participants were not fully aware of all the considerations of PGHD quality. Digital health literacy, wearable accuracy, difficulty in data interpretation, and lack of PGHD integration with electronic medical record systems were among the key challenges identified that impact PGHD quality. CONCLUSION: Co-development of PGHD quality guidelines with relevant stakeholders, including patients, is needed to ensure that quality remote monitoring data from wearables is available for use in more precise and personalized patient care.
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    Mind the Gap: Information Sharing Between Health, Mental Health and Social Care Services
    Kariotis, T ; Prictor, M ; Gray, K ; Chang, S ; Cummings, E ; Merolli, M ; Schaper, L (IOS Press, 2019)
    Information sharing is key to integrated, collaborative, and continuous care. People with a lived experience of mental illness may access several services across the health, mental health and social care sectors, which creates challenges for information sharing. The health informatics community has traditionally not prioritised social care informatics. However, with the growing role of social care in the lives of people with complex health conditions, now is the time when we must consider the articulation between health informatics and social care informatics in Australia. This paper reports the results of a qualitative study to understand the current context of information sharing between health, mental health and social care services. Interviews and focus groups with nine clinicians, caseworkers and support workers were undertaken. Thematic analysis supported the development of several themes. These include the growing role of social care services, the importance of trust and the challenge created by the complexity of conditions people can present with when accessing social care services. To ensure the growing range of social care services do not get left behind with the increasing digitisation of the Australian health system, the health informatics community should prioritise the inclusion of social care informatics in its scope of practice.
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    Improving a Secondary Use Health Data Warehouse: Proposing a Multi-Level Data Quality Framework
    Henley-Smith, S ; Boyle, D ; Gray, K (Ubiquity Press, Ltd., 2019-08-02)
    Background: Data quality frameworks within information technology and recently within health care have evolved considerably since their inception. When assessing data quality for secondary uses, an area not yet addressed adequately in these frameworks is the context of the intended use of the data. Methods: After review of literature to identify relevant research, an existing data quality framework was refined and expanded to encompass the contextual requirements not present. Results: The result is a two-level framework to address the need to maintain the intrinsic value of the data, as well as the need to indicate whether the data will be able to provide the basis for answers in specific areas of interest or questions. Discussion: Data quality frameworks have always been one dimensional, requiring the implementers of these frameworks to fit the requirements of the data’s use around how the framework is designed to function. Our work has systematically addressed the shortcomings of existing frameworks, through the application of concepts synthesized from the literature to the naturalistic setting of data quality management in an actual health data warehouse. Conclusion: Secondary use of health data relies on contextualized data quality management. Our work is innovative in showing how to apply context around data quality characteristics and how to develop a second level data quality framework, so as to ensure that quality and context are maintained and addressed throughout the health data quality assessment process.
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    BYOD in Hospitals-Security Issues and Mitigation Strategies.
    Wani, TA ; Mendoza, A ; Gray, K (ACM Press, 2019)
    The demand for using personal devices in hospitals (BYOD) has increased rapidly over the years. However, BYOD also means that healthcare organisations are at great risk of leaking sensitive information assets like Personal Health Information (PHI) of patients, given that personal devices are outside the control of hospital IT management and may lack important security measures. Hence, the aim of this research is to develop a mitigation strategy which can cater to such security issues. A comprehensive literature review was conducted to identify BYOD security issues and mitigation solutions. This was followed by using two existing security frameworks, the BYOD security framework and People Policy Technology (PPT) model to shape a stepwise mitigation strategy. Technical, managerial and social issues were identified which include unsecure user behaviour by hospital employees, lack of security awareness, usability issues, legal requirements and lost devices. The mitigation strategy elucidates that while information and communication technologies allow better enforcement of security measures; policies and training provide the desired guidance to influence positive user behaviour among employees. The paper also discusses the need for a balance between usability and security in the success of BYOD in hospitals and hence provides systematic guidelines to curb BYOD security risks in hospitals.
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    Participatory methods to engage health service users in the development of electronic health resources: Systematic review
    Moore, G ; Wilding, H ; Gray, K ; Castle, D (JMIR Publications, 2019-02-01)
    © Gaye Moore, Helen Wilding, Kathleen Gray, David Castle. Background: When health service providers (HSP) plan to develop electronic health (eHealth) resources for health service users (HSU), the latter’s involvement is essential. Typically, however, HSP, HSU, and technology developers engaged to produce the resources lack expertise in participatory design methodologies suited to the eHealth context. Furthermore, it can be difficult to identify an established method to use, or determine how to work stepwise through any particular process. Objective: We sought to summarize the evidence about participatory methods and frameworks used to engage HSU in the development of eHealth resources from the beginning of the design process. Methods: We searched for studies reporting participatory processes in initial development of eHealth resources from 2006 to 2016 in 9 bibliographic databases: MEDLINE, EMBASE, CINAHL, PsycINFO, Emcare, Cochrane Library, Web of Science, ACM Guide to Computing Literature, and IEEE Xplore. From 15,117 records initially screened on title and abstract for relevance to eHealth and early participatory design, 603 studies were assessed for eligibility on full text. The remaining 90 studies were rated by 2 reviewers using the Mixed Methods Appraisal Tool Version 2011 (Pluye et al; MMAT) and analyzed with respect to health area, purpose, technology type, and country of study. The 30 studies scoring 90% or higher on MMAT were included in a detailed qualitative synthesis. Results: Of the 90 MMAT-rated studies, the highest reported (1) health areas were cancer and mental disorders, (2) eHealth technologies were websites and mobile apps, (3) targeted populations were youth and women, and (4) countries of study were the United States, the United Kingdom, and the Netherlands. Of the top 30 studies the highest reported participatory frameworks were User-Centered Design, Participatory Action Research Framework, and the Center for eHealth Research and Disease Management (CeHRes) Roadmap, and the highest reported model underpinning development and engagement was Social Cognitive Theory. Of the 30 studies, 4 reported on all the 5 stages of the CeHRes Roadmap. Conclusions: The top 30 studies yielded 24 participatory frameworks. Many studies referred to using participatory design methods without reference to a framework. The application of a structured framework such as the CeHRes Roadmap and a model such as Social Cognitive Theory creates a foundation for a well-designed eHealth initiative that ensures clarity and enables replication across participatory design projects. The framework and model need to be clearly articulated and address issues that include resource availability, responsiveness to change, and the criteria for good practice. This review creates an information resource for future eHealth developers, to guide the design of their eHealth resource with a framework that can support further evaluation and development.
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    Health information work - a scoping review protocol
    Gray, K ; Gilbert, C (PeerJ Preprints, 2019-02-15)
    Background: The work of managing health data, health information or health knowledge is a vital, yet unacknowledged, function in our current health system. This protocol is for a literature review which explores the evolution and development of the concept of health information work. Methodology: A scoping review of published literature in the domains of health sciences, information technology and information sciences has been carried out. A thematic and bibliometric analysis of the resulting set of publications is currently being undertaken. Results: The review results will shed light on the responsibilities and the contribution of the health information workforce, with a synthesis of themes identified in the literature, and analysis of publication year spans, prominent authors, institutions and source journals.
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    Measuring the outcomes of using person-generated health data: a case study of developing a PROM item bank
    Dimaguila, GL ; Gray, K ; Merolli, M (BMJ Publishing Group, 2019-08)
    INTRODUCTION: Patient-reported outcome measures (PROMs) allow patients to self-report the status of their health condition or experience independently. A key area for PROMs to contribute in building the evidence base is in understanding the effects of using person-generated health data (PGHD), and using PROMs to measure outcomes of using PGHD has been suggested in the literature. Key considerations inherent in the stroke rehabilitation context makes the measurement of PGHD outcomes in home-based poststroke rehabilitation, which uses body-tracking technologies, an important use case. OBJECTIVE: This paper describes the development of a preliminary item bank of a PROM-PGHD for Kinect-based stroke rehabilitation systems (K-SRS), or PROM-PGHD for K-SRS. METHODS: The authors designed a method to develop PROMs of using PGHD, or PROM-PGHD. The PROM-PGHD Development Method was designed by augmenting a key PROM development process, the Qualitative Item Review, and follows PROM development best practice. It has five steps, namely, literature review; binning and winnowing; initial item revision; eliciting patient input and final item Revision. RESULTS: A preliminary item bank of the PROM-PGHD for K-SRS is presented. This is the result of implementing the first three steps of the PROM-PGHD Development Method within the domains of interest, that is, stroke and Kinect-based simulated rehabilitation. CONCLUSIONS: This paper has set out a case study of our method, showing what needs to be done to ensure that the PROM-PGHD items are suited to the health condition and technology category. We described it as a case study because we argue that it is possible for the PROM-PGHD method to be used by others to measure effects of PGHD utilisation in other cases of health conditions and technology categories. Hence, it offers generalisability and has broader clinical relevance for evidence-based practice with PGHD. This paper is the first to offer a case study of developing a PROM-PGHD.
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    Exploring the Health Informatics Occupational Group in the 2018 Australian Health Information Workforce Census.
    Butler-Henderson, K ; Gray, K ; Pearce, C ; Ritchie, A ; Brophy, J ; Schaper, LK ; Bennett, V ; Ryan, A (IOS Press, 2019-08-08)
    There has been no empirical evidence about the health informatics workforce in Australia produced in the last ten years. This study reports the findings from an analysis of a subset of the 2018 Australian Health Informatics Workforce Census data. Analysing 420 responses that were identified as the occupational group Health Informatics, the results indicate that whilst most of the workforce is classified as aged (>45 years), many respondents are still relatively early in their health informatics careers. Furthermore, most do not possess any formal education in health informatics and almost a quarter undertake their health informatics role alongside another health-related role. The broad range of position titles and functions demonstrates the breadth within this workforce. Ongoing monitoring of this occupational group is required to inform workforce reform and renewal.