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

John Harlow, Nadir Weibel, Rasheed Al Kotob, Vincent Chan, Cinnamon Bloss, Rubi Linares-Orozco, Michelle Takemoto, Camille Nebeker

Research output: Contribution to journalArticlepeer-review

4 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)183-203
Number of pages21
JournalScience and engineering ethics
Volume26
Issue number1
DOIs
StatePublished - Feb 1 2020

Keywords

  • Digital medicine
  • IRB
  • mHealth
  • Participatory design
  • Pervasive technology
  • Research ethics

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Health Policy
  • Management of Technology and Innovation

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