National Network
The People-Centered Research Foundation (PCRF) has announced that it is going to work with Datavant to de-identify and coordinate the sharing of data across its national clinical research network covering over 60 million patients, reported Conor Hale of Fierce Biotech. The collaboration is planning to create a real-world data network.
PCRF is made up of more than 70 healthcare institutions. The clinical research network includes academic centers, community hospitals, clinics and health plans. The foundation serves as its central office. The Patient-Centered Outcomes Research Institute, or PCORI, helped to develop and launch the network. Patients and caregivers are members of PCORnet’s governance, participate on its committees and provide valued input and leadership in all facets of the development and execution of PCORnet’s research efforts.
PCORnet’s patient-centered approach means that it uses a research model that engages patients, caregivers, clinicians and health systems as partners — alongside researchers — in the conceptualization, design and conduct of studies and in the dissemination of results. Additionally, it prioritizes research that answers key questions that improve the ability to deliver appropriate care which leads to improved outcomes for individuals, communities and their clinicians and healthcare systems.
PCORnet’s hundreds of data sets will be able to use Datavant’s token-based ecosystem, which attempts to preserve the privacy of patients and study participants while also enabling researchers to share real-world data. Datavant and the PCRF say that “unlocking access and merging the findings could create one of the world’s richest sources of patient outcomes research.”
According to Datavant co-founder and CEO Travis May, “We share the common mission of unlocking the power of health data to answer the questions that matter most to patients and those who care for them. We are confident that PCORnet’s de-identified and linked national network will accelerate medical research and improve outcomes for patients.”
Datavant was created from Vivek Ramaswamy’s cluster of specialty-focused biotech “vants” in 2017, after the parent company Roivant Sciences raised $1.1 billion for its wide-ranging efforts. It was charged with “working to help break down the silos of data held among different healthcare firms,” May said. Datavant, the tech-focused subsidiary, was the first company in the Roivant family to work outside of biotechnology. It was created to “dissolve barriers between siloed healthcare data sets in order to unlock novel insights and reduce the time and cost of delivering innovative medicines to patients,” according to May.
Datavant’s vision is backed by Roivant Sciences, Softbank and Founders Fund. It combines technical leadership and healthcare expertise. In 2018, Datavant collaborated with Worldwide Clinical Trials for a real-world data pilot project focused on neurodegenerative diseases. It also partnered with Parexel on using that data to help design clinical trials and gain participants.
