Empowering Patients to Play A Role in Research With Real-World Evidence

Real-world patient data has the potential to improve research, treatments, and outcomes, but is still underutilized, in part due to the challenges of finding and sharing health data today.

Electronic medical records, claims data, and other health data sources can offer a more accurate understanding of the burden of disease on a community, pathways of disease, and patient and provider behaviors. The effective use of this real-world patient data has the potential to help improve clinical research, accelerate clinical development, drive more effective treatments, and ultimately support earlier diagnoses and better options for long-term disease management. Improvements stand to be made, for example, in trial design and in identifying candidates for study and treatment.

Start-up PicnicHealth recognizes the vital role patients can play by giving research organizations access to their medical data. Founded in 2014, PicnicHealth supports clinical research by giving organizations access to electronic medical records. They also make it easier for patients to obtain and manage their healthcare data with the option to make their de-identified data available for medical research. 

To discuss PicnicHealth's mission and the company's work to improve access to real-world patient data for research on Multiple Sclerosis, Bill Evans, Komodo Chief Marketing Officer, spoke with Noga Leviner, Co-founder & Chief Executive Officer of PicnicHealth, for our series, For the Health of It. 

Check out the video of the conversation between Bill and Noga. A transcript of their discussion follows:

Bill Evans: Welcome to For the Health of It, a series where we bring together some of the world's top scientists, analysts, and health experts to discuss some of the biggest challenges in healthcare today. I'm your host, Bill Evans. With us today, we have Noga Leviner, Co-founder and CEO of PicnicHealth. 

The FlywheelMS study is a big opportunity for Picnic to demonstrate how anonymized data can help understand a complex disease. Can you tell us more about that study and why you started with MS?

Noga Leviner: The FlywheelMS collaboration is a project that we're doing with the team at Roche Genentech. It's been an incredible opportunity to collaborate with a group of scientists that have just an enormous amount of experience working with this type of data. By analyzing and pushing the limits on how we examine EMR data, we can better understand disease progression, how care is distributed differently to different patients throughout the healthcare system, or why some patients have responded to medications in one way, and others respond in another way. 

Though MS is a condition that receives significant research dollars, there's still much more to learn about even the basic facts about what this disease looks like and how it affects patients in the real world, not just in a clinical-trial setting.

Bill: What have you been hearing from MS patients about the study? Are they eager to participate? Are they excited about the potential?

Noga: The MS community has been incredible. We've heard from patients that they're interested in doing whatever they can to understand MS better and enhance its treatment. When you're dealing with an MS diagnosis or when you've been living with it for years, we've heard from patients that they want to give something back. 

Bill: How do you see this new mode of collecting real-world data transforming medical research, both today and in the future?

Noga: Today, we still consider real-world data very promising but very limited in its capacity to yield insights. That's because we haven't had patient-centered data in the past. This new modality will allow us to move the needle and use real-world data to make significant contributions to how treatments are diagnosed and treated. 

Bill: What's next for PicnicHealth? 

Noga: We're excited to be getting ready to announce ten new disease areas where we're going to be launching patient cohorts, opening up our platform to allow patients to gain control of their records and make the decision to contribute them for research across ten new diseases. We'll be sharing more news about those disease states in the coming weeks and months.

Bill: Noga, thank you for joining us today. It was great to hear your perspectives and learn more about the company. 

To learn more about PicnicHealth, go to picnichealth.com. Follow us on social media, including LinkedIn and Twitter, for news and updates about future episodes. Thanks for watching For the Health of It, see you next time.