Use Tool 1 for descriptions of the immediate end goal (“What is the immediate end goal of your research?”) and broader research context (“What is the overarching goal your research is contributing to?”) of your work.
Use Tool 4 for describing anticipated benefits of your research (“Imagine a scenario where a specific community or communities benefit from this research”).
Use Tool 3 for describing literature that identifies your question as a research priority (“Is this research a priority of the communities in your sample?”).
Use Tool 2 for writing your COI (“What is your conflict of interest statement regarding this research?”).
Use Tool 5 for identifying the conditions of participant consent (“Does the dataset(s) you will be using list the consent conditions under which the data were collected?”).
Use Tool 5 for providing detail on your data management plan (“Does your research project have its own data management plan…?”).
Tools 3, 4, and 5 pertain to the characteristics of the dataset(s) as you obtain them and the manipulations you made, in particular to demographic categories.
Use Tool 7 to enumerate how you engaged with participant or patient communities (“What access do you have to the community or communities you identified in the prior question?”) to inform your research question or analysis.
Use Tool 5 to connect your usage of particular demographic categories with other literature (“Link to or cite any ongoing discourse or advocacy…”).
Use your plan from Tool 7 (“Briefly describe your plan for contextualizing your findings within a social and environmental context”) to contextualize your findings. Use Tool 10 to more deeply situate your results in context.
Use Tools 4 and 9 for describing appropriate use and possible misuse of your work.
Use Tool 10 to describe outstanding questions you have (“What outstanding questions do you have about relevant context to your results?”) and recommendations for alternative funding structures that may be appropriate for related work (“As you think about your findings, are any of these “soft” conflicts of interest applicable to your work?”).
Much of Tool 5 pertains to pre-existing issues in the dataset(s) used for secondary research. You can use Tool 6 to describe limitations in your analysis due to usage of proxy variables (“Are any of your demographic variables (or a set of demographic variables) standing in as a proxy…”).
Use Tool 2 for describing how “soft” conflicts of interest (“Are any of these “soft” conflicts of interest applicable to your work?”) could influence or could appear to influence your findings.
Use Tool 7 to enumerate reasons why you may have been unable to engage in community consultation.
We recognize that approaches to biorepository research that intentionally center marginalized patient and participant communities may attract critique. The CHIRON project reflects our best understanding of how to represent communities with integrity and practice good stewardship of their data. Each element of the CHIRON toolkit is grounded in the literature. Below is some additional sourcing for the foundations of the CHIRON project:
CHIRON PI Megan Doerr and academic workgroup member Joon-Ho Yu introduced the CHIRON project (prior to it receiving its name) here:
Community engagement studios, which were used to develop the CHIRON toolkit, were developed by the Meharry-Vanderbilt Community-Engaged Research Core:
The CHIRON project team led an adaptation of virtual community engagement studios:
The documentation page of the CHIRON website is a great resource for further sourcing on group harm, priority setting, demographic labeling, and more.
Originally introduced by the BRAIN Initiative at the US NIH, a Plan for Enhancing Diverse Perspectives (PEDP) is increasingly required for grant applications to other NIH departments, such as NIAID and NINDS. Researchers who use CHIRON tools can reference them in their PEDP in a variety of ways, including:
The transdisciplinary nature of the CHIRON project team, which includes a racially and geographically diverse academic workgroup with expertise in genomics, bioethics, critical theory, data governance, and human-computer interaction.
The community-informed foundation for CHIRON project tools, which involved a set of community engagement studios with members of the AI/AN/NH/PI, LGBTQ+, Black, and genetic predisposition communities.
The usage of specific tools which engage with literature and advocacy from marginalized groups, including Tool 3, which enables systematic consideration of patient/participant communities in research and their research priorities; Tool 5 and Tool 6, which rigorously “stress test” datasets and analysis choices for their inclusivity and fitness for purpose; Tool 7, which allows researchers to plan for community engagement and assess their positionality; and Tool 8, which asks researchers to plan outreach activities.
Funders and journals (such as BMJ) may require a Patient and Public Involvement (PPI) statement describing how patients and the public were engaged during their research. Because PPI policies often allow for stated omission of patients and the public in certain contexts (e.g. “Patients and the public were not involved in this study”), researchers should ensure that utilizing the CHIRON toolkit meets the definition of PPI in their specific context before referencing the following:
The foundation of the CHIRON toolkit was a set of community engagement studios with members of the public who self-identify as American Indian, Alaska Native, Native Hawaiian, Pacific Islander (AIANNHPI); Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual, Two-Spirit (LGBTQIA2S+); Black/African American/Black Caribbean/African; and/or individuals with a high penetrance genetic variant. Many of these community members used their experiences as patients to inform the values and ideas that are expressed in the CHIRON toolkit.
The CHIRON toolkit is available for your use on a CC-BY license. Below is information you may need in order to cite or attribute the CHIRON toolkit:
Title: CHIRON toolkit
Author: CHIRON Project Team
At Sage Bionetworks: Megan Doerr (PI), Carly Marten, Stockard Simon, Adam Hindman, Shaun Kalweit
Academic working group: Anouk Ruhaak, Astha Kapoor, Maile M. Tauali’i, Melissa Creary, Jasmine McNealy, Joon-Ho Yu, Samuel A. Moore
Community Engagement Studio facilitators: Andrea Downing, David Andres, Kalei Glozier, Odia Kane
Community Engagement Studio members: Amara Sugalski, Austin Jupiter Freeman, Barry Tong, Deborah Haber, Emma Henricks, Hugo de O. Campos, Kamuela Werner, Kimberly Zayhowski, Lebert Lester III, Liann Hoang Jimmons, Mālia Purdy, Megan Lockhart, Rodney C. Haring, Sarah Roth, Tyra Sampson, and 10 anonymous contributors.
Source: https://sites.google.com/sagebase.org/chiron
License: CC-BY