The COPD Patient-Powered Research Network: Empowering Patients - - PowerPoint PPT Presentation

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)

• ver $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.

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

COPD PPRN

RESEARCH TEAM

Co-Principal Investigators Co-Investigators

Richard Mularski, MD, MSHS, MCR Kaiser Permanente Center for Health Research Richard.A.Mularski@kpchr.org John Walsh COPD Foundation jwwalsh@copdfoundation.org James Crapo, MD National Jewish Health jdc@crapodenver.com Jerry Krishnan, MD, PhD University of Illinois Chicago Jakris@uic.edu Mary Ann McBurnie, PhD Kaiser Permanente Center for Health Research MaryAnn.McBurnie@kpchr.org

COPD PPRN ENROLLMENT

Enrollment avenues for COPD patients into the COPD PPRN

Electronic Enrollment

Visit www.copdpprn.org and electronically sign the informed consent Fill out a brief survey about their health

Written Enrollment

Request a paper enrollment packet from the C.O.P.D. Information Line Fill out a brief survey about their health and mail the survey back to the COPD PPRN

CURRENT ENROLLMENT EFFORTS

Social Media HCP Toolkit Social Media Toolkit Direct Mail Email Utilizing Existing Registries Advertisements & Articles in Publications CONCERT Study Subjects Affiliate Organizations 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
• ur HCP toolkits in their offices

THANK YOU!

PLEASE Think COPDPPRN.

Rolf rtaylor@copdfoundation.org Cara cpasquale@copdfoundation.org

Questions?