The COPD Patient-Powered Research Network: Empowering Patients through Research
WHAT IS PCORI? Name: The Patient-Centered Outcomes Research Institute (PCORI) When: Established by the 2010 Patient Protection and Affordable Care Act. Purpose: Authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORnet: PCORI awarded 29 organizations (18 PPRNs and 11 CDRNs) over $93.5 million to begin creating a large representative clinical research network. COPD Foundation was awarded money to create a PPRN in December 2013 that would be part of PCORnet.
COPD PPRN The COPD Patient-Powered Research Network Our goal is to enroll 75,000 COPD patients in one registry/network that represents the spectrum of COPD disease severity and the diversity of COPD patients in 2015. The COPD PPRN is 1 of 18 other PPRNs. • Collect Patient Reported Outcome Data • Informed consent allows for linking to EHR’s in the future • Overseen by a patient led governing board (8 patients, 5 researchers and 1 ex-officio researcher) • Study approved by Western IRB
RESEARCH TEAM Co-Principal Investigators Richard Mularski, MD, MSHS, John Walsh MCR COPD Foundation Kaiser Permanente Center for jwwalsh@copdfoundation.org Health Research Richard.A.Mularski@kpchr.org Co-Investigators James Crapo, MD Mary Ann McBurnie, PhD Jerry Krishnan, MD, PhD National Jewish Health Kaiser Permanente Center for Health Research University of Illinois Chicago jdc@crapodenver.com MaryAnn.McBurnie@kpchr.org Jakris@uic.edu
COPD PPRN ENROLLMENT Enrollment avenues for COPD patients into the COPD PPRN Visit Electronic Fill out a brief www.copdpprn.org survey about their and electronically Enrollment health sign the informed consent Fill out a brief Written Request a paper survey about their enrollment packet health and mail from the C.O.P.D. Enrollment the survey back to Information Line the COPD PPRN
CURRENT ENROLLMENT EFFORTS Social Media Social Media HCP Toolkit Toolkit Utilizing Direct Mail Email Existing Registries Advertisements Affiliate CONCERT Study & Articles in Organizations Subjects Publications EG USCC
CALL TO ACTION How can the USCC Help the COPD PPRN? • Spread the word about the COPD PPRN to COPD patients through: – Distribute COPD PPRN Recruitment materials • Meetings • Events – Advertise the COPD PPRN on websites – Utilizing social media toolkit for Facebook, Twitter – Present on the COPD PPRN at events • Encourage Health Care Providers you know to put our HCP toolkits in their offices
THANK YOU! PLEASE Think COPDPPRN. Rolf rtaylor@copdfoundation.org Cara cpasquale@copdfoundation.org Questions?
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