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Community-Powered Research: Practical Tools to Strengthen Provider Data and Build Long-Term Data Capacity for Grassroots Organizations 

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Key Takeaways & Notes

Friday. Jan. 23 - Dr. Charles Venator Santiago

1. Identifying Hidden and Untapped Data Sources

  • Many organizations already collect valuable data but don’t recognize it as such.

  • Examples include:

    • Intake forms and provider notes

    • Case management and patient navigation logs

    • Community conversations and outreach notes

    • Language access and interpretation requests

  • The goal is not to collect more data, but to better use what already exists to tell meaningful cultural and community narratives.

2. Building Sustainable, Scalable Data Workflows

  • Data systems must be low-cost, simple, and repeatable.

  • Overly complex tools discourage consistent use.

  • Emphasis on:

    • Basic templates for tracking services and interactions

    • Simple reporting structures staff can maintain independently

    • Designing systems that fit into existing workflows

  • Standardizing key data points across NHHRI partners strengthens cross-institutional learning and prepares organizations to be stronger research collaborators.

3. Helping Organizations Keep Data for Future Research

  • Record-keeping should be intentional and future-facing.

  • Organizations should prioritize data that supports:

    • Grant applications

    • Pilot programs

    • Collaborative research studies

  • Especially valuable data includes:

    • Social determinants of health

    • Patient navigation trends

    • Language and cultural access needs

    • Barriers to care documented over time

  • The concept of “data readiness” was emphasized: being prepared before funding opportunities arise.

4. Strengthening Provider and Partner Engagement

  • Providers play a key role in capturing insights that go beyond clinical documentation.

  • Training providers to note:

    • Patterns they observe

    • Barriers shared by patients

    • Context that affects outcomes

  • Trust-building is essential, particularly with:

    • Mixed-status families

    • Immigrant communities

    • Historically excluded populations

  • Continuous feedback loops help improve participation and data quality over time.

5. Turning Community Knowledge Into Actionable Evidence

  • Community-powered research requires shared ownership of data.

  • Communities should be:

    • Stakeholders in their own studies

    • Partners in interpretation, not just data sources

  • Qualitative and quantitative data work best together:

    • Numbers show scope

    • Stories provide meaning and context

  • Examples from El Instituto and the Puerto Rican Studies Initiative showed how small organizations can influence large policy debates when their data is organized and respected.

Why This Session Matters (Closing Notes)

This training reinforced that building data capacity at the grassroots level is a long-term investment—not just for today’s programs, but for future research opportunities, with or without NHHRI involvement.

By strengthening data stewardship now, organizations can:

  • Generate more accurate and culturally grounded evidence

  • Enter research partnerships with greater confidence

  • Build collective Latino data power at a national scale

Community-powered research is not about extracting data.
It’s about equipping communities to own, use, and lead with their knowledge.