Using Participatory Design to Inform the Connected and Open Research Ethics (CORE) Commons.

Mobile health (mHealth) research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approa...

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Published in:Science & Engineering Ethics Vol. 26; no. 1; pp. 183 - 204
Main Authors: Harlow, John, Weibel, Nadir, Al Kotob, Rasheed, Chan, Vincent, Bloss, Cinnamon, Linares-Orozco, Rubi, Takemoto, Michelle, Nebeker, Camille
Format: Article
Published: Springer Nature Feb2020
Subjects:
Online Access:View this record in EBSCOhost
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        atl: Using Participatory Design to Inform the Connected and Open Research Ethics (CORE) Commons.
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          Harlow, John
          Weibel, Nadir
          Al Kotob, Rasheed
          Chan, Vincent
          Bloss, Cinnamon
          Linares-Orozco, Rubi
          Takemoto, Michelle
          Nebeker, Camille
        affil:
          School for the Future of Innovation in Society, Arizona State University, PO Box 875603, 85287-5603, Tempe, AZ, USA
          Department of Computer Science and Engineering, University of California San Diego, 9500 Gilman Dr #0404, 92093, La Jolla, CA, USA
          Department of Nano Engineering, University of California San Diego, 9500 Gilman Dr #0448, 92093, La Jolla, CA, USA
          Department of Family Medicine and Public Health, University of California San Diego, 9500 Gilman Dr #0811, 92093, La Jolla, CA, USA
          Office of Regulatory Compliance, University of California San Diego, 9500 Gilman Dr, 92093, La Jolla, CA, USA
      su:
        Participatory design
        Research ethics
        Library information networks
        Informed consent (Medical law)
        Mobile apps
        Concept mapping
        Physical fitness mobile apps
      sug:
        subj:
          Participatory design
          Research ethics
          Library information networks
          Informed consent (Medical law)
          Mobile apps
          Concept mapping
          Physical fitness mobile apps
      keyword:
        Digital medicine
        IRB
        mHealth
        Pervasive technology
      ab: Mobile health (mHealth) research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE (Connected and Open Research Ethics) platform now features a community forum, a resource library and a network of nearly 600 global members. The utility of the participatory design process was evaluated by analyzing activities carried out over an 8-month design phase consisting of 86 distinct events including iterative design deliberations and social media engagement. This article describes how participatory design yielded 55 new features directly mapped to community needs and discusses relationships to user engagement as demonstrated by a steady increase in CORE member activity and followers on Twitter.
      pubtype: Academic Journal
      doctype: Article
      src: R
    language: English
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