The CHIRON toolkit is built and ready to pilot by Carly Marten and Megan Doerr
Published on Aug 09, 2024. DOI 10.21428/4f83582b.e2b129cc
We did it! Back in April, we introduced the Community Health Interests for Researchers & Oversight Networks (CHIRON) project and shared our goal: to develop and pilot a toolkit that will encourage researchers, ethics boards, and data access committees to consider group interests as they plan, execute, and report on big health data research. At the time we had been working with community experts and academics for a year and a half to conceptualize what this toolkit might contain. We are excited to share that with the help of Sage’s experienced design team and the continued engagement of our community and academic experts, the CHIRON toolkit is built and ready to pilot!
What’s it like? The CHIRON toolkit is designed to help researchers, ethics boards, and data access committees do the work they already need to do—completing required paperwork, drafting research questions, writing/vetting research proposals, conducting and reporting on analyses, and sharing out findings—with communities in mind. To this end, the toolkit includes:
Ten in-depth self-reflective tools spanning research planning, execution and analysis, and dissemination. These tools, requiring a time commitment of 5-30 minutes each, assist researchers who are using biorepository data in systematically considering the communities behind the data.
A “trustworthiness calculator” that provides a snapshot assessment of researchers’ practices in relation to the communities in their datasets. This pilot-within-a-pilot tool attempts to quantify and provide guidance to emerging community-minded researchers and seasoned community-based participatory researchers alike.
A set of original documentation on topics such as group harm, demographic labeling in big data research, and writing about findings with context. These pieces are deeply researched and sourced and can be bookmarked for the next time you need them.
Transparency-promoting host pages for researchers and project teams to display information about ongoing endeavors. The CHIRON project team will use answers to clearly-marked questions in tools 1, 2, and 5 to populate these pages.
It’s time to pilot! The window for piloting the CHIRON toolkit opens in September and in the fall of 2025. During that time, several groups will be piloting the CHIRON toolkit in their work: researchers using the toolkit to deepen their research, ethics boards and data access committees evaluating and testing elements of the toolkit in their review and approval processes. Our community and academic partners will continue to collaborate with us to evaluate the use of the toolkit within each pilot and across all of the pilots. At the end of the pilot period, the CHIRON toolkit will be available publicly under CC-BY license. We will be sure to report back to you on how the CHIRON toolkit pilots go!
If you are interested in learning more about piloting the CHIRON toolkit in your work as a researcher, ethics board, and/or data access committee member, please reach out (PI: Meg Doerr megan.doerr@sagebionetworks.org). All CHIRON toolkit pilot partners are research participants and, if allowable, will receive a modest incentive for their participation in the pilot.