Harnessing Mobile Devices for Nervous System Disorders Proceedings of a Workshop (2018) / Chapter Skim
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6 Designing Mobile Technologies for Research and Clinical Practice That Reflect Patient Attitudes and Preferences
6 Designing Mobile Technologies for Research and Clinical Practice That Reflect Patient Attitudes and Preferences
Pages 37-44
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From page 37... ...
Mobile technologies have the potential to impact health care through monitoring, therapeutic intervention, participant recruitment for clinical trials, and more, but only if there is widespread adoption and use by consumers, and only if the information collected is useful for physicians, said 37
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From page 38... ...
In addition, if the devices are intended to be used for self-management, the quality of the data comes into question, as well as the appropriateness of providing direct feedback to people without any physician review of the data or regulatory approval of the device. A recent review of initial experience with Apple's open-source smartphone platform, ResearchKit, demonstrated a similarly dramatic dropoff in use after initial enthusiasm for five smartphone apps developed in 2015 (Dorsey et al., 2017)
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From page 39... ...
About half of those with wearables share their data, mostly with family and friends through social media, but also with health care providers, device manufacturers, and researchers, said Loud. The survey did not assess how receptive health care providers were to the shared data, and Loud noted that health care systems may not have the means to accept these data in a format that fits within the constructs of the providers' jobs.
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From page 40... ...
She advocated a co-design paradigm where study participants and patient communities are involved both in the design of the study and the crafting of the informed consent. ASSESSING FUNCTION IN REAL-LIFE SETTINGS Kaye also uses surveys and focus groups as a first step in an iterative research process for studies aimed at developing technologies to assess realworld functional changes associated with aging (Kaye et al., 2011)
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From page 41... ...
To understand how technologies can work in real-world settings, Kaye and his ORCATECH colleagues created the Life Laboratory, where multiple sensors and devices are deployed in people's homes to assess a multitude of functions -- activity, mobility, sleep, cognition, social engagement, medication adherence, etc. (Kaye et al., 2011; Lyons et al., 2015)
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From page 42... ...
Nonetheless, Kaye noted that the technology itself worked well and provided a great deal of natural history data from the cohort. INTEGRATING DIGITAL TECHNOLOGIES INTO CLINICAL TRIALS: BENEFITS TO PATIENTS Digital technologies can speed up trials, reduce the number of participants required and thus their exposure to potentially harmful treatments, and potentially allow assessments to be conducted remotely, thus reducing participant burden, said William Marks.
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From page 43... ...
Various incentives can be used to encourage participation by a broad population. INFORMED CONSENT Obtaining informed consent for studies conducted online and using digital devices requires special considerations to ensure that people are truly informed, said Loud.
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From page 44... ...
To marry sensing and intervention, she suggested that it will be important to make behavioral interventions fit into the person's routine and lifestyle with low effort. In her experience, individuals with behavioral health problems have been overwhelmingly accepting of digital sensing technologies, which she hypothesized is because they know how debilitating these conditions can be and readily accept anything that keeps them functioning at a healthy level.
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