Making sense of big data: Data projects spur progress
Enhancing the record
In April, the Patient-Centered Outcomes Research Institute (PCORI) funded 21 patient-centered clinical research studies to look at using data to improve care for cancer, antibiotic misuse, post-partum depression, post-traumatic stress disorder among veterans, and joint replacement, along with other conditions.
“We believe these studies will address significant gaps in our knowledge and have the potential to change practice and improve patients' outcomes,” says Joe Selby, MD, MPH, executive director of PCORI.
The latest round of PCORI funding totals $44.4 million—in total the nonprofit organization has funded more than 500 patient-centered studies totaling $1.3 billion since 2012.
Adrian F. Hernandez, MD, MHS, director of outcomes and health services research, Duke Clinical Research Institute, and co-principal investigator for PCORI, works with the PCORI-funded PCORnet initiative, which aims to leverage data accumulated through EHRs, uniting patients, health systems and researchers.
“The key question is how to leverage data and increase engagement in an effective and less-expensive way. There are tons of redundancies to address and unanswered questions when it comes to healthcare data,” Hernandez says.
PCORnet is made up of 29 healthcare systems that partner with patients to create more complex clinical research trials. Approximately 75 million patients of diverse backgrounds, health conditions and ages have been part of the PCORnet data study, which started in 2014. The data feature nearly 60 million records that include more than five years of observational data.
One example of how the data will be applied is a three-year clinical study that will monitor aspirin dosing in patients with heart disease to prevent strokes and heart attacks. The study will be called a pragmatic trial, because the research will be done in a normal healthcare setting and will affect a broad group of people. “Research has been a separate part of the healthcare process. We want to make a way to make sure that it is integrated into routine care and not added to care,” Hernandez says.
PCORI also built an infrastructure to help health systems convert EHR data into a common language, and aggregate results to paint more meaningful profiles of patients. The latest round of funding will allow for research organizations to observe the data and create care delivery models that include more robust patient information.
“If you can imagine how fragmented the healthcare system is, this is a big accomplishment in a short period of time, but there is much more work to do,” says Hernandez. “Having data alone is not enough to help patients and change lives.”