Lucila Ohno-Machado, MD, PhD, Associate Dean for Informatics and Founding Chief, Division of Biomedical Informatics at UC San Diego
December 19, 2013 - The UC-Research eXchange (UC-ReX) team, part of the University of California Biomedical Research, Acceleration, Integration and Development (UC BRAID) consortium, has been approved for a funding award by the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand PCORnet: the National Patient-Centered National Clinical Research Network. The patient-centered Scalable National Network for Effectiveness Research (pSCANNER) is one of 29 projects that were approved for a total of $93.5 million from PCORI on December 17 to form this new national resource that aims to boost the efficiency of health research. UC-ReX is a biomedical informatics initiative involving the UC BRAID partners: UC Davis, UC Irvine, UCLA, UC San Diego, and UC San Francisco. Lucila Ohno-Machado, MD, PhD, Associate Dean for Informatics and Founding Chief, Division of Biomedical Informatics at UC San Diego, leads the pSCANNER project. She is a founding member of UC-ReX.
"We are delighted that Dr. Ohno-Machado's team was selected for this funding award to develop a national network to support more efficient patient-centered research," said Gary S. Firestein, MD, director of UC San Diego's Clinical and Translational Research Institute (CTRI), UC BRAID chair, dean and associate vice chancellor of translational medicine at UC San Diego.
PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER). By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them.
Moreover, PCORnet will join together networks operated by both patient communities and health systems and will require patients' and other stakeholders' involvement in all aspects of the collection and use of the data. By enabling researchers and patients, clinicians, and other end-users of study results to interact directly and jointly determine research priorities, such as the selection of specific studies to support, PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies.
During the next 18 months, the UC-ReX team will use the PCORI funds,anticipated to be nearly $7 million, to expand and improve its systems, work to standardize its data, and be part of the process to develop policies governing data sharing and security and protection of patient privacy. It also will refine its network's capacity to engage and recruit patients and other stakeholders interested in participating in research.
The team includes several partner organizations: Veterans Health Administration, Altamed, Queenscare, The Children's Clinic (organized through a collaboration with University of Southern California), UC Davis, UC Irvine, UCLA, UC San Francisco (which together with UC San Diego form the UC-ReX network). Additionally, researchers from RAND Corporation and San Francisco State University collaborate in patient engagement and other important aspects of this complex network.
"PCORI's network-of-networks will transform the way clinical research is conducted in the USA, enabling faster, cheaper, patient-centered studies that utilize the wealth of information collected in the process of care, in a privacy-preserving manner," said Ohno-Machado. "pSCANNER is one of the largest networks in PCORnet, and it innovates in the technology and governance fronts, bringing informatics to a central role in clinical and translational research." pSCANNER will use a distributed architecture to integrate data from three existing networks covering more than 21 million patients.
"We are pleased that pSCANNER will be part of this exciting initiative to build the data structures needed to significantly enhance the speed and efficiency of patient-centered comparative effectiveness research," said PCORI Executive Director Joe Selby. "The process to select the awardees was very competitive. pSCANNER demonstrated it has the expertise, resources, and commitment to engaging patients and other stakeholders to be an excellent fit in PCORnet."
pSCANNER was selected through a review process in which patients, caregivers, and other stakeholders joined scientists to evaluate the proposals. Applications were assessed for the capacity of their network to collect complete, comprehensive clinical data, how well they will engage patients and other stakeholders, and their ability to maintain data security and patient privacy among other criteria.
All awards are approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.
PCORI has awarded a total of $464.4 million since it began funding CER in 2012. Click here for more information about PCORI funding.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions.
About UC San Diego Altman Clinical and Translational Research Institute:
UC San Diego Altman Clinical and Translational Research Institute (ACTRI) is part of a national Clinical and Translational Science Award consortium, led by the National Institutes of Health National Center for Advancing Translational Science. Established in 2010, ACTRI provides infrastructure and support for basic, translational and clinical research throughout the San Diego region to bring discoveries from the laboratory to the bedside, and facilitates training and education of the next generation of researchers. ACTRI carries out its activities in collaboration with institutional and corporate partners and currently has more than 1,400 members.