What is DeSci

At Long COVID Labs, we’re pioneering a new approach to research through decentralized science (DeSci). Rather than relying on the traditional, top-down structure of scientific inquiry, we’re committed to putting the power of discovery in the hands of patients, researchers, and the wider community. Our DeSci model encourages direct community involvement, from voting on research priorities to sharing real-world symptom data, making the research process more inclusive, transparent, and aligned with the needs of those it serves.

In this post, we’ll explore how Long COVID Labs is using DeSci to create a truly community-driven research platform and how you can play an active role in shaping the future of long COVID treatment.

What is Decentralized Science (DeSci)?

DeSci is a novel approach to scientific research that decentralizes access to knowledge, funding, and participation. Using blockchain technology, open-access platforms, and Web3 tools, DeSci enables communities to participate in science more directly and transparently. The DeSci movement, supported by organizations like bio.xyz, is “democratizing access to scientific knowledge and funding, empowering researchers and communities to drive innovation together” (bio.xyz). This approach removes the traditional gatekeepers of research, allowing patients, funders, and scientists to actively shape and influence the research process.

How We Use Community Input to Shape Research

At Long COVID Labs, we believe that those most affected by long COVID should have a say in the research. Here’s how we’re bringing the community directly into the heart of our research:

1. Patient-Centric Trial Design

Patients with long COVID know their symptoms and challenges better than anyone else. By gathering community feedback, we can prioritize studies that address the most pressing needs. For instance, our current clinical trial on Pemgarda and Paxlovid was partly informed by real-world accounts of patients who benefited from a similar combination therapy of Evusheld and Paxlovid (u/rd_108, 2022).

Additionally, many patients with long COVID experience symptoms such as cognitive impairment, which some studies suggest may be related to increased blood-brain barrier permeability. Knowing this, we’ve prioritized exploring treatment combinations that may effectively target viral reservoirs in the brain and other hard-to-reach areas.

2. Voting and Feedback Loops

Our DeSci platform allows community members, including patients, funders, and scientists, to vote on research priorities and provide feedback on study designs. This participatory model ensures that our research is guided by the needs and insights of the people it impacts most. Research shows that community engagement improves research outcomes by making studies more responsive and patient-centered. This feedback loop not only enhances the relevance of our studies but also boosts patient engagement and trust.

3. Transparency in Research Processes

Transparency is a cornerstone of DeSci. All our research processes, data, and results are accessible to the public, fostering accountability and enabling community members to stay informed and involved. Studies suggest that transparent research practices increase trust in scientific findings and reduce barriers to collaboration. By making every step of the research process visible, we empower patients and funders to monitor progress and understand how their contributions are being used.

4. Using Blockchain and Open-Access Platforms

Blockchain technology enables us to securely and transparently document research data, votes, and funding transactions. This open-access model supports a decentralized approach that allows everyone to verify contributions and results. Blockchain also enables us to issue tokens for community voting and investment, aligning with the growing movement of decentralized funding for public health.

Through decentralized funding, we can bypass the lengthy grant cycles and institutional hurdles that often slow down traditional research, allowing us to allocate resources more quickly to the areas that need them most.

The Benefits of Community-Driven Funding

One of the most powerful aspects of DeSci is community-driven funding. Unlike traditional research that relies on government grants or private investors, community-driven funding allows us to finance research in a way that prioritizes public good over profit. Decentralized funding models, like DAOs (Decentralized Autonomous Organizations), make it possible for community members to invest directly in research they believe in and see the outcomes transparently.

By relying on collective contributions, Long COVID Labs aligns with studies showing that public involvement in research funding promotes more equitable and impactful research agendas.

Impact and Next Steps: How You Can Get Involved

We’re excited to continue building this community-driven platform for long COVID research, and there are several ways you can get involved:

• Share Your Story: Patients can contribute by sharing their experiences, symptoms, and results from different treatments, helping shape future studies and trial designs.
• Vote on Research Priorities: As we introduce token-based voting, community members will be able to guide which research areas we prioritize.
• Support the Research: Funders can contribute to a transparent, patient-focused model that accelerates the search for effective treatments.

As we continue developing this platform, we’re committed to making long COVID research faster, more collaborative, and truly patient-centered. Join us as we redefine what’s possible in long COVID research.

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