Building a Research Resource from Patient Experience

Interview by Allison Ramiller, Senior Director, Living Lab Registry

Five months after its public launch, more than 700 people have joined OCRA's Living Lab. The Living Lab is a registry collecting health information and experiences directly from ovarian and uterine cancer survivors to accelerate research. We spoke with Principal Investigator (PI) Leigh Pearce about what the registry is for, what early enrollment shows, and what she hopes researchers will do with this research resource.

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Your training is in epidemiology, and you have extensive experience running studies in gynecologic cancers. What drew you to this project specifically, and what made you want to serve as PI?

The Living Lab is a dream project for me. It brings survivors and researchers together to make ambitious, patient-centered research possible. Historically, most studies have been limited to a single institution or state. The Living Lab is national, creating opportunities for research that includes people from across the United States. Serving as PI allows me to help build the kind of collaborative infrastructure that will facilitate the most powerful research.

What does the Living Lab make possible that has been difficult to do in gynecologic cancer research?

One longstanding challenge has been combining data collected by different studies under different protocols. The Living Lab addresses this by using a standardized approach to data collection from the outset.

The opportunities are tremendous. Researchers will be able to investigate important questions without first spending years recruiting an entirely new cohort, one that would be unlikely to have the Living Lab's national reach. They can also use the Living Lab to identify and recruit participants for innovative new studies. Together, these capabilities could substantially shorten the time to meaningful discovery.

You've led and collaborated on several initiatives to aggregate and share data. What did you learn from earlier efforts that shaped how the Living Lab was designed?

Clear, transparent structures for accessing data and proposing projects are essential. The Living Lab has established governance policies and a Governance Committee to review proposed research. Investigators can explore summary-level information to assess whether a project may be feasible before submitting a proposal through the Discovery Lab, a secure environment in the Research Exchange, where scientists from around the world can access and analyze shared data.

I have also learned throughout my career that early and meaningful engagement with patient advocates is critical to the success of an initiative like this. Our Community Engagement Committee played a pivotal role in launching the Living Lab and continues to help shape its direction.

What are early enrollment numbers telling you? Is there anything that has surprised you?

I'm thrilled by the way the community has embraced the Living Lab. More than 700 survivors are participating so far. Participants range from people who were diagnosed recently to those diagnosed more than 10 years ago. That breadth is exciting because it creates opportunities to study questions across many different stages of survivorship.

What has been especially gratifying is the willingness of survivors to contribute their experiences and data to help improve research and care for others.

What are the biggest areas of focus for you and the Living Lab team right now?

A major priority is population-based recruitment, enrolling people in a way that helps ensure the findings reflect the broader patient population. We are beginning by working with regional and statewide cancer surveillance programs in California, including the Los Angeles Surveillance, Epidemiology, and End Results (SEER) Program. We plan to partner with additional cancer registries across the United States.

This approach will help broaden participation overall and is particularly important for increasing participation among people with uterine cancer. We want the Living Lab to reflect the geographic, racial, ethnic, socioeconomic, and clinical diversity of the communities affected by these cancers.

A researcher comes to you wanting to use the Living Lab to run an analysis or to recruit participants. What's realistic today, and what should they be planning for?

With more than 700 ovarian and uterine cancer survivors enrolled across a wide range of diagnosis years, the Living Lab already represents a meaningful contemporary cohort for recruiting participants into specialized studies.

Researchers should also plan for expanding opportunities as the resource grows. As more participants choose to link their electronic health records, researchers will be able to investigate important questions that bring together structured and unstructured clinical information with patient-reported data. That combination has the potential to provide a much fuller picture of patients' experiences, treatment, and outcomes.

What will success look like in five years, both for research progress and for the people who contributed to the Living Lab?

In five years, success would mean having at least 10,000 participants from across the United States, with numerous studies using Living Lab data and many others recruiting participants through the Living Lab.

But success is not only about enrollment or the number of studies. It means producing real-world evidence that answers questions patients care about, changes clinical practice, and improves the lives of both Living Lab participants and the larger ovarian and uterine cancer community. It also means keeping participants informed about what we are learning from the data they contributed.

Learn more about the Living Lab at ocrahope.org/livinglab.