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What is CHIRON?
CHIRON stands for Community Health Interests for Researchers and Oversight Networks.
The CHIRON Discussion kit is a collection of small-group discussion exercises. These exercises help biorepository-enabled researchers and oversight committees integrate community interests into various aspects of their work.
What Are Biorepositories?
Biorepositories are like libraries that store health data, like tissue samples, genetic data, and more.
Scientists can reuse this data to ask new questions without needing to collect new data.
The Problem
Even when researchers have good intentions, studies that use large datasets can lead to group harm. For example,
How CHIRON Helps
CHIRON is a set of discussion-based exercises to help researchers and oversight committees make thoughtful choices.
It supports research that is more accurate and in-touch with community needs.
Where did CHIRON come from?
Origins
The CHIRON Discussion Kit was created as part of a three-year research project funded by the Robert Wood Johnson Foundation and hosted by Sage Bionetworks.
The Goal
To develop a toolkit that would encourage researchers, ethics boards, and data access committees to consider group interests as they plan, execute, and report on big health data research.
Community Partnership
CHIRON was developed through collaboration between researchers at Sage Bionetworks and members of communities who have historically been impacted by group harm. Community members served as co-researchers, not to be confused with research subjects.
Key Players in CHIRON’s Development
- Host researchers – researchers from the organization hosting the project, Sage Bionetworks.
- Community-based researchers – members of communities historically impacted by group harm.
- External academic researchers – scholars at external institutions hired as consultants.
- Piloters – researchers and oversight committee members who tested CHIRON.
The Process
Conceptualization
Community members took part in community engagement studios (stylized focus groups). Sessions were led by community-based facilitators. A total of 28 sessions were held to explore the problem space and ideate solutions.
Design of Beta
Researchers and designers at Sage Bionetworks built a beta version of the CHIRON toolkit. The design was directly informed by ideas from the community engagement studios, and check-ins with the community-based facilitators.
Community Feedback and Iteration
Community members reviewed a beta version of the toolkit and offered feedback. Two rounds of feedback were held, followed by changes to the design. This resulted in the original CHIRON toolkit.
Pilot Studies
The original CHIRON toolkit was piloted with researchers and oversight committee members. Four groups piloted the toolkit in studies ranging from three to five months.
Co-Analysis of Pilot Data
As the pilot study data came in, de-identified excerpts were shared with community members, who shared their analyses in co-analysis sessions. Community analyses were integrated into the “official” findings shared by the host organization.
Creation of the CHIRON Discussion Kit
Researchers at Sage Bionetworks created an updated version of the CHIRON toolkit (where you are now!) based on pilot findings and co-analysis input. The most noteworthy change is the transition to a discussion-based format from a written form-based format.
The Theory Behind CHIRON
CHIRON is rooted in nudge theory, a behavioral science approach that encourages “positive” behavior change. Instead of telling people what to do, nudges work by shaping the choices in front of them.
A classic example: placing vegetables at the front of a grocery store to encourage healthier eating.
CHIRON uses this approach to encourage researchers and oversight teams to keep community impact in mind during their work with biorepositories.
How CHIRON Evolved
Changes from Version 1 to 2
We made major updates to the original CHIRON toolkit based on feedback from our pilot users. Here’s what we changed and why.
From Forms to Discussion Guides
The Exercises – Clarified and Reordered
- Improve clarity
- Reduce redundancy
- Offer more context where needed
- Reflect user feedback on flow and logic
The Readings – More Digestible
Clearer Navigation and Guidance
Updated Labels for Clarity
- “Tools” → “Exercises”
- “Documentation” → “Readings”
- We also renamed every exercise to better reflect their content.