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

Area of Science:

• Digital Health Ethics
• Human-Computer Interaction
• Research Ethics

Background:

• Mobile health (mHealth) research introduces novel ethical, legal, and social challenges related to informed consent, data management, and bystander rights.
• Existing frameworks may not adequately address the complexities of data collection via pervasive sensors and mobile applications.

Purpose of the Study:

• To develop a web-based platform, the Connected and Open Research Ethics (CORE) commons, to support the mHealth research community.
• To address ethical, legal, and social challenges through a participatory design approach involving diverse stakeholders.

Main Methods:

• A participatory design approach was employed, engaging stakeholders in the development process.
• Activities included iterative design deliberations and social media engagement over an 8-month period.
• Platform utility was evaluated by analyzing 86 distinct events and user engagement metrics.

Main Results:

• The CORE platform was established, featuring a community forum, resource library, and a network of nearly 600 global members.
• Participatory design resulted in 55 new features directly aligned with community needs.
• User engagement demonstrated a steady increase in member activity and Twitter followers.

Conclusions:

• Participatory design is an effective method for developing resources to address emerging ethical challenges in mHealth research.
• The CORE platform demonstrates the utility of community-driven development in fostering engagement and meeting user needs.
• The study highlights the importance of collaborative approaches in navigating the evolving landscape of digital health research ethics.