Operation Restore Trust in Research (ORTIR) is a community-guided program that gives people the knowledge and tools to evaluate health research for themselves. Not blind faith. Not reflexive fear. Informed judgment, which is exactly what good research deserves, and exactly what every person has the right to exercise. This project was founded several years ago by Prof. VJ Periyakoil in close partnership with the communities we serve.

Why does ORTIR exist?

Because science is only as good as the people included in the study. Medical treatments do not work the same way in every person. Age, geography, genetics, chronic conditions, and medication history can all affect how a patient responds to treatment. When research draws from a narrow slice of the population, doctors may end up applying findings to patients who were not adequately studied when building the evidence. This is a basic scientific problem, and it has consequences for every patient who receives a treatment that was not adequately tested in people like them. It also wastes millions of dollars as the studies conducted do not have sufficient heterogeneity to be reproducible. 

What is heterogeneity of treatment response, and why does ORTIR care about it?

Heterogeneity of treatment response means that the same treatment can produce very different outcomes in different people. A drug that works well in one patient may be less effective, or even harmful, in another, depending on factors like genetics, age, body composition, existing conditions, and the medications they are already taking. When clinical trials do not include all sectors of patients who will eventually receive a treatment, physicians are left guessing about how it will perform in the patients who were left out. ORTIR exists because broad participation in research is what produces accurate, reliable gold standard science.

Who built ORTIR?

The community did, in partnership with the Periyakoil lab.  Before a single tool was created, the ORTIR team conducted 30 focus groups with various community groups and listened. A Community Advisory Board set the direction, reviewed the findings, and shaped every resource in the program. This was not designed for communities by well-meaning outsiders. It was built with communities from the beginning, because the people most affected by gaps in research knowledge are often the best positioned to identify what those gaps actually are.

What did communities say they needed from research education?

Five things, stated clearly and consistently across every discussion: (1) to understand what the research is actually for, (2) to know what happens to their personal information, (3) to see real evidence that the research will benefit people like them, (4) to know they can say no without consequences, and (5) to be treated throughout the entire process as partners rather than data sources. These five principles became the foundation of everything ORTIR teaches.

What does poor and/or variable participation in research mean for the quality of medical science?

When significant portions of the patient population are missing from clinical trials, the evidence has blind spots. A treatment may clear its efficacy threshold in a trial population and then perform differently, sometimes dangerously so, when applied to patients who differ from those studied. Heterogeneity of treatment response is not a theoretical concern. It is an active, ongoing problem that produces real harm when research populations are too narrow to capture it. Broad participation is how science catches those differences before they reach the clinic.

What is the “trust bank account,” and why does it matter for ORTIR?

Every interaction between a researcher and a patient is a small transaction. Eye contact: deposit. Taking time to explain something twice: deposit. Treating a question as reasonable rather than inconvenient: deposit. A dismissive tone, rushed paperwork, or body language that signals you are an obstacle: withdrawal. None of these moments may feel monumental in isolation, but they are cumulative. Trust is built or eroded in these small exchanges, not in grand institutional statements. ORTIR is designed to help researchers and institutions earn trust on purpose, not by accident.

Why did ORTIR choose videos as a main tool?

Because dense documents written in technical language put the burden on the reader, and that burden lands hardest on the people most often missing from research to begin with. ORTIR’s videos are short, plain-language, and designed to travel: waiting rooms, community centers, faith communities, neighborhood organizations. You should not need to be a scientist to understand what a research study is asking of you.

Is ORTIR a one-time program or an ongoing effort?

ORTIR is a cycle, not a campaign. Listen to community concerns, learn from multiple conversations, return findings to the Community Advisory Board, co-create educational tools, equip community partners, build trust over time, then do it again. The goal is a permanent shift in how researchers and communities relate to one another.

What is the bottom line for ORTIR?

Treatments works best when the research behind it reflects the full range of people it is meant to treat. That requires participants who feel safe enough to say yes, and researchers prepared to earn that yes honestly. ORTIR gives communities the knowledge to ask the right questions. It also sets the standard researchers are expected to meet. Gold-standard science depends on both.

How can I help ORTIR?

There are many ways you can help us. True progress relies entirely on research that the world can confidently trust. Stanford is uniquely positioned to anchor this standard of integrity, and we welcome collaboration through either foundational funding or specialized resources. By aligning your support with this mission, you protect the credibility of discoveries that shape our collective future. We welcome your partnership through financial support or specialized resources to help bring this project to life. Your commitment ensures that rigorous, objective research continues to drive global progress.