A collaboration between two organizations in the Patient Centered Outcomes Research Network (PCORnet) is bringing together clinical and patient-reported data on people living with chronic obstructive pulmonary disease (COPD).
Approximately one in five Americans over the age of 45 suffer from COPD. A news item on the PCORnet web site notes that to address the 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).
More than 6,400 people have shared their experiences through surveys and agreed to participate in research that is meaningful to them.
Now the COPD PPRN is partnering 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.
The PCORnet article was co-authored by Elisha Malanga, chief research officer of the COPD Foundation; Richard Mularski, M.D., a senior investigator at the Center for Health Research at Kaiser Permanente; and Cara Pasquale, M.P.H., director of the COPD PPRN.
They write that the collaboration allows 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.
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.
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