Better Research Through Community-Centered Data Governance
by flok Health
At flok Health, we believe that research data belongs to the community it comes from. That’s why we’ve pioneered a community-centered data governance model that puts our members in control.
What Is Community Consent?
Traditional research consent is between an individual and a researcher. Community consent adds another layer — the community itself has a voice in how data is collected, stored, shared, and used.
How It Works
- Transparency: We clearly communicate what data is collected and how it will be used
- Community Input: Community members participate in governance decisions about data use
- Ongoing Consent: Consent isn’t a one-time event — participants can adjust their preferences
- Benefit Sharing: Research results are shared back with the community
Why It Matters
For rare disease communities, data is especially precious. Small sample sizes make every participant’s contribution vital. Our governance model ensures that this contribution is respected and that research truly serves the community’s interests.
Learn more about our research initiatives on our Research page.