Authors: Elisha Malanga is the Chief Research Officer of the COPD Foundation, a patient-led advocacy organization dedicated to improving the lives of those affected by COPD and the prime organization for the COPD Patient-Powered Research Network (COPD PPRN). She has worked with the COPD Foundation since 2008 and has led numerous efforts including the creation of the Foundation’s peer reviewed scientific journal, Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation.
Richard A. Mularski, MD, MSHS, MCR has been involved with the COPD PPRN from inception and is a founding Co-PI. He is a senior investigator at The Center for Health Research, Kaiser Permanente; an affiliate associate professor of medicine at Oregon Health & Science University; and senior physician with board certifications in pulmonary medicine, critical care medicine, internal medicine, and palliative medicine.
Cara B. Pasquale, MPH is the director of the COPD PPRN as well as a Co-PI. She has worked with the COPD Foundation since 2014 and has helped build the overall structure and governance of the COPD PPRN and works directly with patient partners. She has 11 years of work experience in coordinating and managing projects and 8 years of public health experience including working with researchers to translate their work into policy, systematic literature reviews, and engaging stakeholders for large scale collaborations.
People living with COPD, or chronic obstructive pulmonary disease, often describe COPD as an “invisible disease” that is underdiagnosed, under researched, and underfunded. COPD is an umbrella term used to describe many lung diseases that often get worse over time, including emphysema, chronic bronchitis, refractory asthma, and severe bronchiectasis. Approximately one in five Americans over the age of 45 suffer from COPD. It is the third leading cause of death in the United States.
November is COPD Awareness Month
Ways to Get Involved:
- Web-based platform, COPD360social.org, helps patients and caregivers unite as a community.
- Check out online campaigns that highlight COPD stories.
- “Go Orange” with the COPD Foundation to promote COPD awareness.
Learn more at COPDfoundation.org
To address the urgent research needs of people living with COPD, the COPD Foundation and the Center for Health Research at Kaiser Permanente Northwest founded the COPD Patient-Powered Research Network (COPD PPRN) within PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The COPD PPRN brings together thousands of COPD patient partners and those at risk, offering them the opportunity to share their information and participate in research. To date, over 6,400 people have shared their experiences through surveys and agreed to participate in research that is meaningful to them.
Now, thanks to a collaborative effort between the COPD PPRN and another PCORnet partner network, information gaps surrounding COPD may be able to be filled quicker. In 2016, the COPD PPRN began a collaboration with the Patient Outcomes Research to Advance Learning Clinical Data Research Network (PORTAL CDRN). PORTAL brings together three leading health care delivery systems (Kaiser Permanente, HealthPartners, and Denver Health) and their affiliated research centers along with patients, clinicians, and operational leaders.
This collaboration between the two PCORnet partner networks has allowed the organizations to marry COPD PPRN patient-reported information with PORTAL’s electronic health records from participants in the Kaiser Permanente Northwest healthcare system. Electronic health records usually capture clinical information such as tests, diagnoses, and events like hospitalization. Information reported by COPD PPRN participants often includes patients’ perceptions of their quality of life (for example, whether or not they are able to go to work, how much pain they experience, or how often they are in the hospital). Combining these data sources will ensure that the experiences of people living with COPD are included in research and make the data stronger.
Collaborators at Kaiser Permanente Northwest built a system to safely allow the transfer of their data to the COPD PPRN. The COPD PPRN then integrated this data by using the PCORnet Common Data Model format. Now that the data integration is complete and validation testing successful, the COPD PPRN is exploring ways to scale the process, such as using this method in the response to funding opportunities. Ultimately, it hopes to use the process and technology it developed to link with more CDRN sites across PCORnet and other health systems.
People living with COPD, just like people with other diseases represented across PCORnet, are eager for the answers that patient-centered outcomes research might be able to provide. Large datasets that bring patients’ clinical data together with patient-reported experiences and preferences could provide researchers with the ability to develop, test, and implement better, personalized treatment strategies.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit 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 healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.