Pharma giant Roche and its subsidiary Genentech have inked a deal with PicnicHealth, a startup that helps patients access and share their medical records. 

The real-world evidence deal will allow the pharmaceutical companies to have access to PicnicHealth’s set of de-identified patient records in order to gain insights about certain diseases and treatments. Patients must first consent to their records being used before they are part of this research.  

The deal will focus specifically on multiple sclerosis, but later down the road the companies are looking at teaming up to study Huntington’s disease, paroxysmal nocturnal hemoglobinuria and hemophilia. 

This announcement coincides with the news that PicnicHealth is launching a new scientific research platform that lets patients share their medical records with researchers. 

“Today we are working with top research organizations across academia and industry to provide access to data from de-identified and aggregated records – if and only if patients opt in to contribute,” the company wrote in its blog announcing the new. “This data, known as 'real-world data' helps researchers better understand what diseases look like outside of the controlled setting of clinical trials where research has traditionally been done. This way, researchers get a fuller picture of how diseases really look and how care really happens over patients’ lives.”

WHY IT MATTERS 

Today a slew of pharmaceutical companies are interesting in collecting real world data as a way to speed up research and to better understand what is happening outside of just the clinical disease setting.  

“Our strategic partnership with PicnicHealth will allow us to better understand serious diseases and accelerate development of effective treatments tailored to the individual needs of patients,” James Sabry, head of Roche Pharma Partnering, said in a statement. “By combining PicnicHealth’s uniquely built and curated real-world data sets with groundbreaking science we are aiming to make personalized healthcare a reality across multiple therapeutic areas. ”

THE LARGER TREND

This isn’t Roche’s first foray into using digital tools for real-world evidence. In 2017 the company acquired oncology EHR software firm Flatiron health for $1.9 billion. 

“This is an important step in our personalized healthcare strategy for Roche, as we believe that regulatory-grade real-world evidence is a key ingredient to accelerate the development of, and access to, new cancer treatments,” Roche Pharmaceuticals CEO Daniel O’Day said in the statement at the time of the acquisition. “As a leading technology company in oncology, Flatiron Health is best positioned to provide the technology and data analytics infrastructure needed not only for Roche, but for oncology research and development efforts across the entire industry.”

Meanwhile, startups like Aetion and OM1 have received support from investors and business partners for their own real-world data research platforms.