We’re one of eight children’s hospitals hand-picked to pioneer the linking of patient data systems to speed up medical research.

Seattle Children’s is one of eight U.S. pediatric hospitals tapped to create PEDSnet, a national health data network designed to speed up medical research and improve patient care. PEDSnet is one of 11 clinical data research networks funded by the Patient-Centered Outcomes Research Institute (PCORI). A $7 million PCORI grant supports PEDSnet.

Linking data from multiple pediatric healthcare institutions will make it possible to perform important clinical research at a reasonable cost and to research the questions that are most important to patients, families and health system leaders.

The high interest in having Seattle Children’s participate stems from the work of Drs. Mark Del Beccaro and Rita Mangione-Smith. Del Beccaro’s worked on the proof of concept for PEDSnet that showed patient data could be successfully combined across multiple sites. Mangione-Smith is a national leader in patient-centered outcomes research.

The PEDSnet team spent much of 2014 addressing the technical and ethical challenges to pooling patient data from multiple institutions. When complete in 2015, the network will pool medical data from 11 healthcare organizations and 18 patient-powered networks. Ultimately, the PEDSnet will allow researchers and clinicians to access medical data on more than 1 million children.

“Most pediatric diseases are quite rare, so researchers often struggle to find enough patients to study when trying to solve medical problems,” says Del Beccaro, who is one of the principal investigators on this project. Collaboration by pediatricians across institutions to study treatments for cystic fibrosis and childhood cancers has shown how information sharing can improve outcomes for fatal diseases.

“The PEDSnet infrastructure will speed up the process of sharing patient data. It will be one of the biggest changes ever to occur in clinical research, and Seattle Children’s will be at the table when it happens.”

Creating a common code

One challenge to compiling patient data is that medical records are not uniformly recorded. Different institutions use varying codes or terminology to reference the same information. To help with translation, PEDSnet developers at Seattle Children’s are creating a mechanism that will convert all collected data into a common language with standard codes.

“Imagine if everyone had their own telephone network so no one could talk to each other without special permission for each call,” explains Del Beccaro. “That’s what researchers face trying to find data from outside sources. PEDSnet will change that.”

Protecting patient privacy

PEDSnet developers are also navigating differences around data privacy and security policies that arise when compiling patient data from various institutions.

“Trust between institutions takes time to build,” says Mangione-Smith. “We’re addressing this by having leaders from each organization participate on a steering board that reviews and approves all policies for the network.”

The project’s second phase of the project is slated to run from late 2015 through 2018 and includes growing the network to encompass 10% of the nation’s children, conducting observational research and interventional studies, demonstrating a measurable impact on patient health and implementing a sustainable business model.