Clinical research produces many remarkable advances. But our research system also faces many challenges. What if patients, researchers, health systems, clinicians and others came together to make health research more efficient and powerful, and less expensive, by collaboratively harnessing the power of large amounts of health data? That’s what PCORnet seeks to do
Research, especially large clinical trials, is very expensive and can take a long time both to set up and conduct. Often studies are not big enough or designed properly to answer the critical questions they seek to address, don’t involve patients who are representative of key populations, or don’t yield results that will apply well in typical healthcare settings. And many fail to answer the kinds of practical questions that patients and clinicians face.
PCORnet aims to address these issues by creating a “network of networks” that harnesses the power of large amounts of health information and unique partnerships among patients, clinicians, health systems and others. In the process, it seeks to transform the culture of research from one directed by researchers to one driven by the needs of patients and other healthcare stakeholders.
PCORnet is made up of two kinds of individual partner networks—Clinical Data Research Networks (CDRNs) and Patient-Powered Research Networks (PPRNs):
CDRNs are networks that originate in healthcare systems, such as hospitals, health plans, or practice-based networks, and securely collect health information during the routine course of patient care.
PPRNs are operated and governed by patient groups and their partners and are focused on a particular condition or characteristic.
A Coordinating Center, led by Harvard Pilgrim Health Care Institute, the Duke Clinical Research Institute, and Genetic Alliance provides technical and logistical support to the data networks.
PCORnet’s Phase 1 Achievements
PCORnet began as a collection of 29 individual partner networks—11 CDRNs and 18 PPRNs. Their charge was to build the infrastructure for a secure national resource that research teams could use to efficiently and easily conduct important patient-centered research. These partner networks also had to figure out how to create processes that would make sure patients play a central and meaningful role in how PCORnet is organized and runs. PCORnet and its partner networks met many of their Phase I goals.
What’s Ahead During Phase II
In July 2015, PCORI’s Board approved $142 million for PCORnet’s three-year second phase of development. These awards will fund the 13 CD
RNs and 20 PPRNs that will finish building the network to the point where researchers from both within and outside PCORnet will be able to tap into its capacity to conduct a range of important studies. Read more about Phase II awards and plans here.