Developing a Dispute Resolution Process for Contributing Data to Clinical Trials

The Problem

The ubiquity of mobile phones--and their many sensors for collecting data-- offers a new way for biomedical researchers to recruit patients to participate in clinical trials quickly and easily. Using either Apple or Android platforms, participants consent to both make their data available to a clinician and to have their anonymized data published for others researchers who may be able to employ it in novel studies. This has the potential to accelerate research and cures dramatically.

However, the current process developed by Sage Bionetworks does not provide clinical trial participants with a method to raise meaningful ethical objections to third party re-use of their data.

The Project

In order to promote participant trust and establish ethical procedures in an emerging field, we are designing a flexible dispute resolution process so that those who make the gift of data have a voice in controlling their data. By looking at dispute resolution systems across disciplines and communities, we can design a system that balances the rights of data donors with the unique advantages of open health data. 

Client

Sage Bionetworks