Thank you for signing our previous petition. We need your support again for an even more important initiative that will benefit every patient community.
The Patient Centered Care Advocacy Group has submitted a comprehensive proposal to NIH Director Dr. Jay Bhattacharya that could transform how medical research is conducted in America. Strengthening NIH Research Standards: A Framework for Scientific Integrity, Transparency and Stakeholder Engagement
We're asking you to sign this petition calling on NIH to adopt these scientific integrity and stakeholder engagement standards for all research programs.
Why This Matters to You
Federal audits by the Government Accountability Office and HHS Inspector General have documented serious problems: inconsistent conflict-of-interest oversight, variable transparency, and research priorities that often fail to reflect real-world patient needs. These aren't just bureaucratic issues—they result in wasted taxpayer dollars, delays in finding treatments, and research that doesn't address what patients actually need.
The Solution: Ten Standards That Benefit Everyone
The proposal recommends ten specific standards that create comprehensive oversight:
For Patients: Systematic stakeholder engagement ensuring you have formal input into research priorities—not token consultation, but real influence over what gets studied and how.
For Scientific Quality: Term limits for leadership positions prevent entrenchment and ensure fresh perspectives. Enhanced transparency makes data available for independent verification. Regular external review with uniform standards across all NIH programs.
For Accountability: Centralized conflict-of-interest monitoring with public disclosure. Independent oversight of grant review processes. Annual reporting on research outcomes and replication rates.
Real Benefits for All Americans
These standards will deliver tangible improvements:
Better Health Outcomes: Improved diagnostics, expanded treatment options, and research portfolios aligned with patient priorities rather than purely academic interests. When research addresses real-world needs, patients benefit directly.
Economic Returns: Earlier diagnosis and effective treatments reduce healthcare costs through fewer hospitalizations and less long-term care. Increased workforce participation as people get better care. Reduced disability payments. These economic benefits far exceed implementation costs.
Preventing Waste: Federal audits show that inconsistent oversight enables research programs providing minimal benefit relative to cost to continue indefinitely. These standards eliminate that waste by requiring accountability and results.
Removing Conflicts of Interest: Centralized monitoring with public disclosure ensures financial interests don't bias research. Decisions get made on scientific merit, not money.
Reproducible Science: The standards support NIH Director Bhattacharya's "replication revolution" by making reproducibility trackable and rewarded—shifting success from publication volume to independently verifiable evidence. This means research you can trust.
Universal Benefits
This isn't about one disease—it benefits everyone. Whether you're concerned about cancer, heart disease, diabetes, Lyme disease, ME/CFS, Long COVID, autism, or any other condition, these standards ensure your disease gets the same rigorous safeguards and patient input.
The Path Forward
These standards can be implemented through NIH Director authority without new legislation. There will be Federal Register comment periods where your voice matters. But first, we need to demonstrate broad public support.
Please sign this petition today and share it widely. Every signature shows NIH that patients across all disease areas demand research integrity, transparency, and meaningful stakeholder engagement.
Together, we can transform medical research to truly serve patients.
Sign the petition: https://c.org/smrpxq8XJC