Engaging Academics and Communities to Develop the CHIRON Toolkit

How we have engaged academic and community experts as leaders in Community Health Interests for Researchers & Oversight Networks (CHIRON) by Carly Marten, Samuel Moore, and Megan Doerr

Published on Apr 18, 2024. DOI 10.21428/4f83582b.24d36f6f

The power behind the Community Health Interests for Researchers & Oversight Networks (CHIRON) project comes from two groups: academic knowledge holders and community experts. These two workgroups have been leading our exploration of how to consider group interests in biorepository research.

Our academic workgroup began collaborating in late 2022. Anouk Ruhaak, Astha Kapoor, Jasmine McNealy, Joon-Ho Yu, Maile M. Tauali’i, Melissa Creary, and Samuel A. Moore come from a wide range of academic fields (learn more in Sam’s reflection on being a “Critical Theorist for Hire,” below),

Academic workgroup members Anouk, Astha, Jasmine, Joon, Maile, Melissa, and Sam

and bring a broad spectrum of lived experiences to their work. Together they addressed a set of seven framing questions for the project:

CHIRON framing questions:

1. What constitutes community in a biorepository context? What roles do self-identification and algorithmic identification play? How is membership defined and by whom?

2. In what situations is it necessary to invoke consent of a predefined community?

3. If we assume that communities evolve, for how long is a definition of community applicable?

4. How do we ensure the representativeness of a given community? Are there limits?

5. What meaningful role(s) can communities play in biorepository research? What is the role and responsibilities of researchers in alerting/ engaging/addressing communities?

6. What indicators should researchers use to guide when/how to engage with communities?

7. Is community consent a ceiling or floor: does it provide, prevent, or require entry of individuals?

Through live conversations spanning 16 time zones (!) and asynchronous collaboration on shared idea boards and documents, our academic workgroup mined existing scholarship across their domains of expertise to establish the project’s academic grounding. We’ll be sharing these results with you in upcoming posts.

Critical Theorist for Hire by Samuel A. Moore

Much has been written about the declining influence of humanities disciplines and the research of critical theorists who study power dynamics and the ethical and political dimensions of social issues. As jobs are threatened across the humanities and social sciences worldwide, it is important to push back on common narratives around the lack of impact or use of critical research and highlight the various ways in which our disciplines contribute to an interdisciplinary perspective that leads to tangible outcomes. This project is a positive story of how critical perspectives can be valued within interdisciplinary settings.

I may be unique, but I have never worked on a project that takes this approach, and I have joked that I enjoy feeling like a critical theorist ‘for hire’. The academic research team meets frequently and sets itself small pieces of work relating to our research on community consent in biorepositories, drawing on the varied expertise of STS scholars, media theorists, community practitioners, data experts and bioethicists. This work is intensely collaborative and discursive, which is somewhat at odds with the lone nature of much of the work of humanities and social science research. It is also not aimed at producing traditional outputs but instead building a ‘magic box’ of tools that researchers can use to navigate the tricky terrain of community consent.

Ultimately, our project is reflective of a highly innovative methodological approach that foregrounds interdisciplinary collaboration and values deep, theoretical expertise on questions around subjectivities, the meanings of community and the different ways of knowing across cultures. In showing the benefits of collaborations across the humanities and sciences, such an approach could be easily adopted within a range of projects that explore the relationship between the theoretical and the practical. In doing so, we also continue to show the value of critical research against the backdrop of the defunding and dismantling of our disciplines.

As the academic workgroup set off to read, ideate, and collaborate, we planned a series of community engagement studios which roughly corresponded to each of the project’s framing questions listed above.

Community engagement studios (CE studios) are an approach to consulting affected communities developed by researchers at Vanderbilt University and Meharry Medical College. We recruited four community workgroups in the CE studio format, centering groups that have historically (and, unfortunately, not so historically) been harmed by medical research: people who identify as American Indian, Alaska Native, Native Hawaiian, and Pacific Islanders (AI/AN/NH/PI); LGBTQ+ people; Black people; and people with genetic variants that make them predisposed to certain inherited conditions, like Hereditary Breast and Ovarian Cancer syndrome (HBOC). These groups were facilitated by Andrea Downing, David Andres, Kalei Glozier, and Odia Kane.

Community workgroup facilitators Andrea, David, Kalei, and Odia

While CE studios often do not involve meeting with the same groups on the same topics repeatedly, the 29 community experts in our groups had experiences as patients, patient advocates, clinicians, and active community members that proved essential to addressing concepts salient to group harm in biorepository research.

In advance of the first CE studio meetings, we created animated videos illustrating different challenges to group interests to get the conversation started. We used a digital whiteboard platform for brainstorming and documenting our conversations and held CE studios over Zoom to maintain community experts’ safety in a pandemic context. The groups met seven times for 90 minutes, with an academic workgroup member joining as a consultant for each meeting. As groups continued to meet, the intimacy and depth of discussion also increased. This was another feature of the continuity of groups; the structure of our CE studios created the space to discuss the spectrum from positive experiences, hopes, and aspirations, to medical trauma and negative encounters with research. The benefit to the CHIRON project of our summer of CE studios is greater than we can articulate. Our mandate now is to deliver a toolkit that complements the quality of these discussions.