PCORI has long recognized the value of accessing large collections of health data to make clinical research faster, easier, and less costly to conduct. Having data from tens of thousands—or tens of millions—of people can enable research teams to find out more about how different therapies affect individual patients. That knowledge, in turn, will allow patients, their caregivers, and their clinicians to make better-informed healthcare decisions.
These concepts have driven the creation of PCORnet, PCORI’s initiative to harness the power of vast volumes of health data and patient-reported outcomes. In just a few years, PCORnet has created a platform by which researchers can access information from about 90 million people who have sought medical care in the past five years. With input from patients and other healthcare stakeholders, these networks focus on outcomes that are most important to patients and those who care for them. Researchers can draw on the records, maintained by PCORnet’s partner networks, to conduct a wide variety of studies.
So we were delighted to hear a story on NPR today spotlighting research using electronic health records to personalize medicine. The piece features the work of two pioneering health systems that are participating in PCORnet.
"Patients are always saying, don't just give me the averages, tell me what happened to others who look like me and made the same treatment decisions I did," Tracy Lieu, MD, MPH, of Kaiser Permanente Northern California told NPR. "And tell me not only did they live or die, but tell me what their quality of life was about." Lieu is a co-principal investigator of the PCORnet partner network Patient Outcomes Research to Advance Learning (PORTAL).
PORTAL brings together leading healthcare systems, including Kaiser Permanente. Using data from healthcare systems that enroll nearly 12 million members, the network studies the effectiveness of different treatment options.
NPR also highlighted work being done at Geisinger Health System to integrate genetic tests into its electronic medical records. Geisinger is one of several health systems that have come together to form PCORnet’s PaTH Network, which has collected data from nearly 8 million members to support patient-centered studies.
We look forward to important findings from research that takes advantage of large amounts of data. The insights gained from work that draws on clinical information from Kaiser, Geisinger, and other health systems will provide valuable evidence for patients’ and clinicians’ decision making.