Participatory medicine: model based tools for engaging and empowering the individual

Sagar, Mark; Broadbent, Elizabeth

doi:10.1098/rsfs.2015.0092

Cited by 9 publications

(6 citation statements)

References 45 publications

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“…PGHD’s effects on the health of the individual have yet to be demonstrated or defined. It is known that when patients understand their illness, they may become active problem solvers and improve their health behavior; for example, it has been suggested that people will stop smoking when they personally see the connection between activity and illness [ 2 ]. Moreover, patients’ use of PGHD has been suggested to improve health management coordination between them and their health care providers and treatment teams, assist patients in self-managing their care, engage patients, and increase the social support they receive and their sense of social connectedness [ 3 - 8 ].…”

Section: Introductionmentioning

confidence: 99%

Person-Generated Health Data in Simulated Rehabilitation Using Kinect for Stroke: Literature Review

Dimaguila

Gray

Merolli

2018

JMIR Rehabil Assist Technol

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BackgroundPerson- 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.ObjectiveThis review attempts to understand to what extent Kinect-based stroke rehabilitation systems (K-SRS) have used PGHD and to what benefit.MethodsThe 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.ResultsIn 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.ConclusionsThis 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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Section: Introductionmentioning

confidence: 99%

Person-Generated Health Data in Simulated Rehabilitation Using Kinect for Stroke: Literature Review

Dimaguila

Gray

Merolli

2018

JMIR Rehabil Assist Technol

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“…PGHD use has been reported to increase patients' interest in their own health care processes [2][3][4] and the management of their own health status [5]. It is known that when patients understand their illness, they may become active problem solvers and improve their health behavior [6]. However, PGHD use can also cause feelings of frustration and discouragement [7], and may even make some patients feel excluded from the benefits of PGHD use [5].…”

Section: Understanding the Effects Of Person-generated Health Datamentioning

confidence: 99%

Patient-Reported Outcome Measures of Utilizing Person-Generated Health Data in the Case of Simulated Stroke Rehabilitation: Development Method

Dimaguila¹,

Gray²,

Merolli³

2020

JMIR Res Protoc

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Background Person-generated health data (PGHD) are health data that people generate, record, and analyze for themselves. Although the health benefits of PGHD use have been reported, there is no systematic way for patients to measure and report the health effects they experience from using their PGHD. Patient-reported outcome measures (PROMs) allow patients to systematically self-report their outcomes of a health care service. They generate first-hand evidence of the impact of health care services and are able to reflect the real-world diversity of actual patients and management approaches. Therefore, this paper argues that a PROM of utilizing PGHD, or PROM-PGHD, is necessary to help build evidence-based practice in clinical work with PGHD. Objective This paper aims to describe a method for developing PROMs for people who are using PGHD in conjunction with their clinical care—PROM-PGHD, and the method is illustrated through a case study. Methods The five-step qualitative item review (QIR) method was augmented to guide the development of a PROM-PGHD. However, using QIR as a guide to develop a PROM-PGHD requires additional socio-technical consideration of the PGHD and the health technologies from which they are produced. Therefore, the QIR method is augmented for developing a PROM-PGHD, resulting in the PROM-PGHD development method. Results A worked example was used to illustrate how the PROM-PGHD development method may be used systematically to develop PROMs applicable across a range of PGHD technology types used in relation to various health conditions. Conclusions This paper describes and illustrates a method for developing a PROM-PGHD, which may be applied to many different cases of health conditions and technology categories. When applied to other cases of health conditions and technology categories, the method could have broad relevance for evidence-based practice in clinical work with PGHD.

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“…Utilisation of PGHD by patients promotes participatory health, as it has been suggested to increase their engagement, improve health management coordination with their care providers and increase their sense of social support and connectedness 10–15. When patients better understand their illness, it may make them more active in improving their health behaviour 16…”

Section: Introductionmentioning

confidence: 99%

“… 10–15 When patients better understand their illness, it may make them more active in improving their health behaviour. 16 …”

Section: Introductionmentioning

confidence: 99%

Measuring the outcomes of using person-generated health data: a case study of developing a PROM item bank

Dimaguila

Gray

Merolli

2019

BMJ Health Care Inform

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IntroductionPatient-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.ObjectiveThis 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.MethodsThe 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.ResultsA 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.ConclusionsThis 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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Participatory medicine: model based tools for engaging and empowering the individual

Cited by 9 publications

References 45 publications

Person-Generated Health Data in Simulated Rehabilitation Using Kinect for Stroke: Literature Review

Person-Generated Health Data in Simulated Rehabilitation Using Kinect for Stroke: Literature Review

Patient-Reported Outcome Measures of Utilizing Person-Generated Health Data in the Case of Simulated Stroke Rehabilitation: Development Method

Measuring the outcomes of using person-generated health data: a case study of developing a PROM item bank

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