Justice-Informed Clinical Research

I am intervening in the MIC by building a community-centered, justice-informed network that reimagines how clinical research is accessed, designed, and experienced. This work creates virtual and hybrid spaces that reduce isolation, expand access to resources, and support connection across geographies, particularly for historically excluded communities.

Grounded in health and disability justice principles, the intervention prioritizes accessibility, care work, and community accountability while challenging traditional hierarchies in research and professional spaces. It also advances skills-first pathways into research and STEM, helping to reduce structural barriers and foster a more inclusive, connected, and equitable ecosystem.

I chose this intervention in response to the persistent disconnect between clinical research institutions and the communities they aim to serve. Working within these systems, I observed how hierarchy, rigid structures, and geographic limitations reinforce isolation, not only for patients, but also for researchers and practitioners seeking more equitable and relational ways of working.

This strategy emerged from a need to create spaces that prioritize connection, accessibility, and care as foundational components of research and professional engagement. By centering health justice and disability justice principles, I am intentionally designing approaches that acknowledge how exclusion is built into traditional systems and actively work to counter it. The focus on virtual and hybrid community building reflects both a practical and philosophical commitment to expanding access, reducing barriers, and fostering sustained relationships that are not dependent on institutional proximity or status.

This work disrupts the MIC by challenging its reliance on hierarchy, exclusivity, and rigid institutional control over knowledge, access, and participation. Rather than reinforcing traditional pathways into research and healthcare spaces, this intervention redistributes access by centering community, lived experience, and relational networks as critical forms of expertise. By creating decentralized, accessible spaces for connection and knowledge exchange, the work shifts power away from institutions and toward communities. It also disrupts conventional clinical research practices by questioning who gets to participate, how studies are designed, and what barriers prevent equitable engagement. Integrating care work and community accountability into professional spaces further challenges the extractive and transactional nature of many institutional models.

Work and Economies

One of the primary challenges has been capacity, both in terms of time and resources required to sustain meaningful engagement while navigating institutional demands. Internal layoffs have also significantly impacted this work, fracturing some of the relationships and sustained collaborations that were critical to building momentum and trust. These disruptions have underscored the fragility of initiatives that operate within or alongside institutional structures that are themselves unstable. Maintaining continuity, supporting participants through transitions, and rebuilding connections has required ongoing adaptation and intentionality. There are also ongoing tensions in working to transform systems while still operating within them. Balancing institutional expectations with community centered values, and resisting the co optation of these approaches, continues to require careful navigation.

Over time, this intervention has become more distributed, participatory, and adaptive. What began as a more facilitated and structured effort has evolved into a shared model of ownership, where participants are increasingly taking initiative to convene spaces themselves. Community members have begun requesting more frequent gatherings, organizing sessions independently, and shaping the structure of engagement based on their needs. This shift reflects a growing sense of trust, relevance, and collective investment in the work. The format has also expanded beyond fully virtual spaces to include hybrid approaches, allowing for more flexible and inclusive participation. These changes have strengthened the network’s resilience, reduced reliance on a single point of coordination, and deepened the sense of community and continuity despite institutional challenges.