General Practice and Primary Care - Research Publications
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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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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.