A study on improving patient consent for data sharing in research
Official title: iAGREE: A Multi- Center, Networked Patient Consent Study
Funded at Yale University · NIH-10576284 · Data updated 2026-11-12
This study is working on a new online tool to help patients easily understand and control how their health information can be shared for research, making sure they feel more informed and confident about their choices.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Yale University NIH-funded |
| Lab location | 1 site (New Haven, United States) |
| Project start | March 1, 2023 |
| Project end | February 28, 2026 |
| Funding year | 2024 |
| Award (this year) | $809,433 |
| NIH project number | 5R01HG011066-05 |
| Project ID | NIH-10576284 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are patients who are concerned about how their health data is used and wish to have a say in the sharing of their information.
✕Less likely to help
Patients who are not interested in participating in research or do not have concerns about data sharing may not benefit from this research.
What this research studies
This research aims to enhance the process of obtaining patient consent for sharing their health data in research studies. It addresses the common issue that many patients are unaware their de-identified data can be used without their explicit consent. By developing an electronic consenting platform, the study will allow patients to have more control over their data sharing preferences. The project involves engaging with stakeholders to understand their needs and creating policies that align with those needs, ultimately improving transparency and trust in the research process.
Why it matters
Potential benefit: If successful, this research could empower patients by giving them greater control over their health data and improving their participation in research.
How similar studies have gone: Other research has shown success in improving patient engagement and consent processes, indicating that this approach has potential for positive outcomes.
Where this research is happening
-
Yale University
New Haven, United States Active
Researchers
- Principal investigator: Ohno-Machado, Lucila — Yale University
- Study coordinator: Ohno-Machado, Lucila
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About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.