PCORI adds $142M for big data research

Awards to support 34 partner networks, add 7 more
By Bernie Monegain
09:21 AM
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The Patient-Centered Outcomes Research Institute Board of Governors has approved nearly $142.5 million to support the continuing development and expansion of PCORnet, the National Patient-Centered Clinical Research Network.

PCORI is an independent, nonprofit authorized by Congress in 2010. Its mission is to fund patient-centered research.

The new funds enable the addition of seven health data networks to PCORnet, which is designed to link researchers, patient communities, clinicians and health systems in research partnerships that leverage the power of large volumes of health data maintained by the partner networks.

PCORI is developing PCORnet to enhance the nation's capacity to conduct patient-centered health outcomes research more quickly, less expensively, and with greater potential impact than is now possible. Through the active participation of patients and other healthcare stakeholders, PCORnet will ensure that research focuses on the questions and outcomes that matter most to patients and those who care for them, say PCORI officials.

[See also: PCORI gives $120M for clinical research and PCORI invests $151M in clinical research.]

The funding will support a three-year second phase of development during which several research studies will begin. Specifically, it will back 34 individual health data networks that together make up PCORnet, including continued support for 27 networks selected to participate in PCORnet's first phase of development, which began in April 2014.

Seven new networks will join PCORnet, expanding its capacity to conduct studies on a wide range of health topics and questions affecting multiple patient populations.

The new partner networks bring additional expertise, resources and patient participation focused on Alzheimer's disease and dementia, autism spectrum disorders, heart disease, obesity, Parkinson's disease, behavioral health disparities among low-income populations, and health disparities among sexual and gender minorities, among other areas.

Together, the 34 PCORnet partner networks cover more than 150 conditions and a wide variety of population groups. Many of the networks involve multiple organizations, giving PCORnet sites in every state nationwide.

"Having key stakeholders  researchers, patients, clinicians and health systems  working together to co-create PCORnet has been a tremendous step forward in how we approach health research," said PCORI Executive Director Joe Selby, MD, in announcing the new funding.

"Our main goal for the next three years is to sharply ramp up PCORnet's capacity to serve as the platform for rapidly and efficiently conducting high-quality, patient-centered studies," added Rachael Fleurence, director of PCORI's Comparative Effectiveness Research Methods and Infrastructure Program. "We'll continue to facilitate a national conversation about what it means to share health data and the roles we all have in addressing the health questions and outcomes that matter most to patients."

The seven networks joining PCORnet and their research focus are:

  1. Community and Patient-Partnered Centers of Excellence for Behavioral Health, University of California, Los Angeles – Behavioral health in under-resourced communities
  2. The Fox Insight Network, The Michael J. Fox Foundation for Parkinson’s Research – Parkinson's disease
  3. Interactive Autism Network, Hugo Moser Research Institute at the Kennedy Krieger Institute – Autism
  4. The National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network, Mayo Clinic – Alzheimer's disease
  5. Population Research in Identity and Disparities for Equality Patient-Powered Research Network (PRIDE-PPRN), University of California, San Francisco – Health among sexual and gender minorities
  6. The Patient-Centered Network of Learning Health Systems, Mayo Clinic – Heart failure, obesity, osteogenesis imperfecta
  7. OneFlorida Clinical Data Research Network, University of Florida – Hypertension, obesity, Duchenne