PCORnet Groups Bring Together Clinical, Patient-Reported Data on COPD | Healthcare Informatics Magazine | Health IT | Information Technology Skip to content Skip to navigation

PCORnet Groups Bring Together Clinical, Patient-Reported Data on COPD

December 4, 2017
by David Raths
| Reprints
Result could provide researchers with the ability to develop better, personalized treatment strategies

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.

 

 

 

 

Get the latest information on Health IT and attend other valuable sessions at this two-day Summit providing healthcare leaders with educational content, insightful debate and dialogue on the future of healthcare and technology.

Learn More

Topics

News

Study will Leverage Connecticut HIE to Help Prevent Suicides

A new study will aim to leverage CTHealthLink, a physician-led health information exchange (HIE) in Connecticut, to help identify the factors leading to suicide and to ultimately help prevent those deaths.

Duke Health First to Achieve HIMSS Stage 7 Rating in Analytics

North Carolina-based Duke Health has become the first U.S. healthcare institution to be awarded the highest honor for analytic capabilities by HIMSS Analytics.

NIH Releases First Dataset from Adolescent Brain Development Study

The National Institutes of Health (NIH) announced the release of the first dataset from the Adolescent Brain Cognitive Development (ABCD) study, which will enable scientists to conduct research on the many factors that influence brain, cognitive, social, and emotional development.

Boston Children's Accelerates Data-Driven Approach to Clinical Research

In an effort to bring a more data-driven approach to clinical research, Boston Children’s Hospital has joined the TriNetX global health research network.

Paper Records, Films Most Common Type of Healthcare Data Breach, Study Finds

Despite the high level of hospital adoption of electronic health records and federal incentives to do so, paper and films were the most frequent location of breached data in hospitals, according to a recent study.

AHA Appoints Senior Advisor for Cybersecurity and Risk

The American Hospital Association (AHA) has announced that John Riggi has joined the association as senior advisor for cybersecurity and risk.