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Increasing patient engagement in rehabilitation exercises using computer-based citizen science.

ABSTRACT: Patient motivation is an important factor to consider when developing rehabilitation programs. Here, we explore the effectiveness of active participation in web-based citizen science activities as a means of increasing participant engagement in rehabilitation exercises, through the use of a low-cost haptic joystick interfaced with a laptop computer. Using the joystick, patients navigate a virtual environment representing the site of a citizen science project situated in a polluted canal. Participants are tasked with following a path on a laptop screen representing the canal. The experiment consists of two conditions: in one condition, a citizen science component where participants classify images from the canal is included; and in the other, the citizen science component is absent. Both conditions are tested on a group of young patients undergoing rehabilitation treatments and a group of healthy subjects. A survey administered at the end of both tasks reveals that participants prefer performing the scientific task, and are more likely to choose to repeat it, even at the cost of increasing the time of their rehabilitation exercise. Furthermore, performance indices based on data collected from the joystick indicate significant differences in the trajectories created by patients and healthy subjects, suggesting that the low-cost device can be used in a rehabilitation setting for gauging patient recovery.

SUBMITTER: Laut J

PROVIDER: S-EPMC4368773 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature

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Increasing patient engagement in rehabilitation exercises using computer-based citizen science.

Laut Jeffrey J Cappa Francesco F Nov Oded O Porfiri Maurizio M

PloS one 20150320 3

Patient motivation is an important factor to consider when developing rehabilitation programs. Here, we explore the effectiveness of active participation in web-based citizen science activities as a means of increasing participant engagement in rehabilitation exercises, through the use of a low-cost haptic joystick interfaced with a laptop computer. Using the joystick, patients navigate a virtual environment representing the site of a citizen science project situated in a polluted canal. Partici ...[more]

PMID: 25793867

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Project description:The increasing presence of technology in health care has created new opportunities for patient engagement and with this, an intensified exploration of patient empowerment within the digital health context. While the use of technology, such as patient portals, has been positively received, a clear linkage between digital health solutions, patient empowerment, and health outcomes remains elusive.The primary objective of this research was to explore the views of participants enrolled in an electronic health record portal access trial regarding the resultant influence of this technology on their feelings of patient empowerment.The exploration of patient empowerment within a digital health context was done with participants in a tethered patient portal trial using interpretive description. Interpretive description is a qualitative methodology developed to pragmatically address clinical health questions. Patient demographics, self-reported health status, and self-identified technology adaptation contributed to the assessment of empowerment in this qualitative approach.This research produced a view of patient empowerment within the digital health context summarized in two overarching categories: (1) Being Heard and (2) Moving Forward. In each of these, two subcategories further delineate the aspects of empowerment, as viewed by these participants: Knowing More and Seeing What They See under Being Heard, and Owning Future Steps and Promoting Future Care under Moving Forward. This work also highlighted an ongoing interconnectedness between the concepts of patient empowerment, engagement, and activation and the need to further articulate the unique aspects of each of these.The results of this study contribute needed patient voice to the ongoing evolution of the concept of patient empowerment. In order to move toward more concrete and accurate measure of patient empowerment and engagement in digital health, there must be further consideration of what patients themselves identify as essential aspects of these complex concepts. This research has revealed relational and informational elements as two key areas of focus in the ongoing evolution of patient empowerment operationalization and measure.

Project description:BACKGROUND:The language of "participant-driven research," "crowdsourcing" and "citizen science" is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more "democratic," "patient-centric," or "lay" alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs are embracing this populist rhetoric to encourage wider public participation. DISCUSSION:We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of "citizen science" outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of "public engagement" when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the "care.data" project of the National Health Service in England, and its proactive uses in the "Precision Medicine Initiative" of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of "citizen science," the contexts in which it is used, and its demands with respect to participation, engagement, and governance.

Project description:BackgroundPatient portals (ie, electronic personal health records tethered to institutional electronic health records) are recognized as a promising mechanism to support greater patient engagement, yet questions remain about how health care leaders, policy makers, and designers can encourage adoption of patient portals and what factors might contribute to sustained utilization.ObjectiveThe purposes of this state of the science review are to (1) present the definition, background, and how current literature addresses the encouragement and support of patient engagement through the patient portal, and (2) provide a summary of future directions for patient portal research and development to meaningfully impact patient engagement.MethodsWe reviewed literature from 2006 through 2014 in PubMed, Ovid Medline, and PsycInfo using the search terms "patient portal" OR "personal health record" OR "electronic personal health record". Final inclusion criterion dictated that studies report on the patient experience and/or ways that patients may be supported to make competent health care decisions and act on those decisions using patient portal functionality.ResultsWe found 120 studies that met the inclusion criteria. Based on the research questions, explicit and implicit aims of the studies, and related measures addressed, the studies were grouped into five major topics (patient adoption, provider endorsement, health literacy, usability, and utility). We discuss the findings and conclusions of studies that address the five topical areas.ConclusionsCurrent research has demonstrated that patients' interest and ability to use patient portals is strongly influenced by personal factors such age, ethnicity, education level, health literacy, health status, and role as a caregiver. Health care delivery factors, mainly provider endorsement and patient portal usability also contribute to patient's ability to engage through and with the patient portal. Future directions of research should focus on identifying specific populations and contextual considerations that would benefit most from a greater degree of patient engagement through a patient portal. Ultimately, adoption by patients and endorsement by providers will come when existing patient portal features align with patients' and providers' information needs and functionality.

Dataset Information

Increasing patient engagement in rehabilitation exercises using computer-based citizen science.

Publications

Increasing patient engagement in rehabilitation exercises using computer-based citizen science.

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