Melbourne Medical School Collected Works - Research Publications
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ItemHealth information work - a scoping review protocol(PeerJ, 2019)
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. -
ItemResearch data management in health and biomedical citizen science: practices and prospects(Oxford University Press (OUP), 2019)Background: Public engagement in health and biomedical research is being influenced by the paradigm of citizen science. However, conventional health and biomedical research relies on sophisticated research data management tools and methods. Considering these, what contribution can citizen science make in this field of research? How can it follow research protocols and produce reliable results? Objective: The aim of this article is to analyze research data management practices in existing biomedical citizen science studies, so as to provide insights for members of the public and of the research community considering this approach to research. Methods: A scoping review was conducted on this topic to determine data management characteristics of health and bio medical citizen science research. From this review and related web searching, we chose five online platforms and a specific research project associated with each, to understand their research data management approaches and enablers. Results: Health and biomedical citizen science platforms and projects are diverse in terms of types of work with data and data management activities that in themselves may have scientific merit. However, consistent approaches in the use of research data management models or practices seem lacking, or at least are not prevalent in the review. Conclusions: There is potential for important data collection and analysis activities to be opaque or irreproducible in health and biomedical citizen science initiatives without the implementation of a research data management model that is transparent and accessible to team members and to external audiences. This situation might be improved with participatory development of standards that can be applied to diverse projects and platforms, across the research data life cycle.
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ItemHealth information work - a scoping review protocol(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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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.