Living Lab Testimonial: Kevin Holcomb, MD, Chair, Obstetrics and Gynecology, Northwell Health

Kevin Holcomb, MD, Chair, Obstetrics and Gynecology at Northwell Health

Video transcript:

The Living Lab is a anonymous and secure patient registry that's being composed by the Ovarian Cancer Research Alliance.

And it's really revolutionary. One, it'll be the largest data set of its size. What's novel about it is that it is an opportunity for a patient to have a longitudinal ongoing relationship with this data set where they're offering information that really speaks to their experience with their cancer. Often these areas are not studied in our research. Side effects, how patients are dealing psychologically with their diagnosis, the financial impact. And so this is an opportunity for all those pieces of information to be brought together in one site. And what's really unique about it is that this is one not a one-time deal. Very often patients go on trials. They share their data for one episode of care. They often don't know what became of that, what research was done from it. This will be different. Patients will be able to see ongoing what's happening with that data, what insights are being developed from it. And it's a two-way street. They can get information back from it. They can get evidence-based information to answer their questions that they're looking for. I think that this is really an important change in how we do research because let's face it, gyn cancers are relatively rare. That's a good thing. But it's a bad thing in the sense that our data sets tend to be small. Research tends to happen in academic institutions that are siloed. This is an opportunity to really democratize how we collect data and I think it'll lead to faster discoveries in the end, and so if I was speaking to a patient and she asked me should I be involved with the Living Lab, I would wholeheartedly say yes. It's simple to participate. I've seen the power of a plan, a power of empower - when women are empowered in their care, and I can't think of a better way to be empowered than to contribute to a data set like the Living Lab. So I would wholeheartedly support their involvement, because your experience is power. And we can help turn that power into progress.