COPD Foundation Lead Team Approved for Funding Award from Patient-Centered Outcomes Research Institute to Become Integral Part of New National Clinical Research Network
WASHINGTON, DC. (Dec. 19, 2013) – A team led by the COPD Foundation, in collaboration with the COPD Outcomes-based Network for Clinical Effectiveness and Research Translation (CONCERT) and the COPDGene research networks has been approved for a funding award by the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand a health data network that will be part of PCORnet: the National Patient-Centered Clinical Research Network. The COPD Foundation Patient Powered Research Network (PPRN) is one of 29 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.
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 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 COPD Foundation-led team will use the PCORI funds 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 is led by principal investigator Dr. Richard Mularski from The Kaiser Permanente Center for Health Research (KPCHR), along with co-investigators, John Walsh, co-founder of the COPD Foundation, Dr. James Crapo from National Jewish Health, Dr. Mary Ann McBurnie of the Data Coordinating Center at KPCHR, and Dr. Jerry Krishnan from University of Illinois, Chicago.
The collaboration brings together the COPD Foundation, a patient developed and governed education, advocacy and support group with the research expertise of two federally funded research networks to establish innovative research infrastructure for COPD. The COPD PPRN endeavors to enroll 100,000 people with COPD, approximately 0.5% of the U.S. COPD population, into a registry with scalable data hub for the purpose of supporting patient-driven, patient centered outcomes research (PCOR). Enrolled patients will represent the spectrum of COPD disease severity—most with multiple morbidities, across diverse geographic regions, broad age and socio-economic ranges, both genders, and all racial and ethnic groups.
“We are very honored to receive this funding by PCORI. The ability to monitor proper health outcomes is essential for lowering healthcare costs, which we hope will ultimately improve the lives of all those living with COPD,” said John W. Walsh, president and co-founder of the COPD Foundation. “On the eve of the COPD Foundation’s 10th anniversary, we are thankful for this opportunity to build upon the progress we’ve established to take the COPD community to the next level in patient-centered research.”
“The funding by PCORI for this COPD collaborative Patient Powered Research Network is fantastic news with huge potential to significantly enhance patient-centered research for those with COPD,” said the Principal Investigator, Richard Mularski, MD, MSHS, MCR from Kaiser Permanente Center for Health Research. “Chronic obstructive pulmonary disease is a critical part of U.S. healthcare affecting 12–24 million individuals in the nation. It is responsible for 800,000 hospitalizations per year, and recently became America’s 3rd leading cause of death. Deficits in implementation into clinical practice for treatments that have been demonstrated from efficacy studies to improve the quality of life, functional status, and survival in patients with COPD, make COPD ripe for patient-centered outcomes research.”
“We are pleased that the COPD PPRN 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 and the COPD PPRN demonstrated it has the expertise, resources, and commitment to engaging patients and other stakeholders to be an excellent fit in PCORnet.”
The COPD PPRN 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. For more information about PCORI funding, click here.
About COPD Foundation
The COPD Foundation was established to speed innovations which will make treatment more effective and affordable, to undertake initiatives that result in expanded services for COPD patients, and improve the lives of patients with COPD and related disorders (through scientific research, education & awareness) that will lead to prevention and a stop in the progression of COPD.
The Patient-Centered Outcomes Research Institute (PCORI) (www.pcori.org) 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. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.