General Practice and Primary Care - Research Publications
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ItemAustralians' views on personal genomic testing: focus group findings from the Genioz study(SPRINGERNATURE, 2018-08)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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ItemPerson-Generated Health Data in Simulated Rehabilitation Using Kinect for Stroke: Literature Review.(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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ItemPatient-generated health data management and quality challenges in remote patient monitoring(OXFORD UNIV PRESS, 2019-12)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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ItemImproving a Secondary Use Health Data Warehouse: Proposing a Multi-Level Data Quality Framework(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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ItemParticipatory methods to engage health service users in the development of electronic health resources: Systematic review(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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ItemMeasuring the outcomes of using person-generated health data: a case study of developing a PROM item bank(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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ItemExploring the Health Informatics Occupational Group in the 2018 Australian Health Information Workforce Census.(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.
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ItemAustralians' views and experience of personal genomic testing: survey findings from the Genioz study(NATURE PUBLISHING GROUP, 2019-05-01)Personal genomic tests (PGTs) for multiple purposes are marketed to ostensibly healthy people in Australia. These tests are generally marketed and purchased online commercially or can be ordered through a health professional. There has been minimal engagement with Australians about their interest in and experience with ordering a PGT. As part of a multistage, interdisciplinary project, an online survey (Stage 2 of the Genioz study) was available from May 2016 to May 2017. In total, 3253 respondents attempted the survey, with 2395 completed Australian responses from people with and without experience of having a PGT: 72% were female; 59% of the whole sample were undertaking/or had a university education; and, overall, age ranged from 18-over 80. A total of 571 respondents reported having had a genetic test, 373 of these classifiable as a PGT. A bivariate analysis suggests people who have undergone PGT in our sample were: women aged 25 and over; or in a high socioeconomic group, or have a personal or family diagnosis of a genetic condition (P ≤ 0.03). After a multivariate analysis, socioeconomic status and a genetic condition in the family were not of significance. The most common types of PGT reported were for carrier status and ancestry. Findings suggest greater awareness of, and an increasing demand for non-health related PGT in Australia. To support both consumers and health care professionals with understanding PGT results, there is a need for appropriate support and resources.
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ItemFrom Content Knowledge to Community Change: A Review of Representations of Environmental Health Literacy.(MDPI AG, 2018-03-07)Environmental health literacy (EHL) is a relatively new framework for conceptualizing how people understand and use information about potentially harmful environmental exposures and their influence on health. As such, information on the characterization and measurement of EHL is limited. This review provides an overview of EHL as presented in peer-reviewed literature and aggregates studies based on whether they represent individual level EHL or community level EHL or both. A range of assessment tools has been used to measure EHL, with many studies relying on pre-/post-assessment; however, a broader suite of assessment tools may be needed to capture community-wide outcomes. This review also suggests that the definition of EHL should explicitly include community change or collective action as an important longer-term outcome and proposes a refinement of previous representations of EHL as a theoretical framework, to include self-efficacy.
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ItemEthics of research into learning and teaching with Web 2.0: Reflections on eight case studies(Springer Nature, 2013-12-01)The unique features and educational affordances of Web 2.0 technologies pose new challenges for conducting learning and teaching research in ways that adequately address ethical issues of informed consent, beneficence, respect, justice, research merit and integrity. This paper reviews these conceptual bases of human research ethics and gives examples of their consideration in the literature of research into learning and teaching with Web 2.0. The paper goes on to give an account of reflective practice by two academic developers in relation to ethical issues they encountered, considered and addressed in eight case studies, which were part of a larger multi-university Australian study into learning and teaching with Web 2.0. The paper concludes that the human research ethics approval process needs to be understood as a series of measures that are important to protect not only the students but also the teacher-researchers and their institutions when doing learning and teaching research with Web 2.0. This understanding is important for educators and as well for educational developers, educational technologists and human research ethics review committees (also known as institutional review boards).