Recognizing the Role Stakeholders Play in Shaping the Design and Development of the CORE Initiative

Over a year ago, we set out to create the Connected and Open Research Ethics (CORE) platform. Using a participatory design approach, our team developed a web-based tool offering a Forum, a Resource Library and a Network to support human research involving emerging technologies. A primary goal being to create a community of stakeholders to address the increasingly complex ethical, legal, and social issues posed by these technologies.

Using an iterative process, we documented all of our CORE-related activities between January and June 2016 and used that information to map out how engagement among our users helped contribute to the final design of the CORE. We logged, categorized, and examined distinct relevant events which took place, including team meetings, conferences, feature developments, and focus groups. Access to the platform, network growth, and social media statistics were also documented to track progress and uptake.

Our findings, which were presented at the 2017 Annual Public Health Research Day at UC San Diego, showed a clear relationship between the participatory design approach and solid network growth. Over the six months reported in this graph, we developed 55 new features that were directly mapped to specific needs identified in collaboration with 43 different stakeholders.

In the same period the CORE platform saw a steady increase in use to 1,508 visits, with 51.9% of the users being new users. Likewise, the people creating an account on the Network increased by 20 members per month, on average, with the total reaching 135 by June 2016. Social media statistics showed 103 followers on Twitter, confirming engagement.

Following the CORE design/build phase, we initiated beta testing which occurred between July and December 2016. We continue to improve CORE based on user feedback that we have obtained through key informant interviews and observations. As of April 9th, we have 297 CORE Network members who are able to converse via the Forum and share or borrow documentation of IRB approved consent and protocol samples.

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