Arizona State University (ASU) has joined a national initiative that brings patients, researchers, health systems and clinicians together to help people make informed healthcare decisions and improve healthcare delivery and outcomes. That innovative initiative is the National Patient-Centered Clinical Research Network (PCORnet) funded by the Patient-Centered Outcomes Research Institute (PCORI). PCORnet is a national evidence generation system of large, highly representative health and healthcare data that supports clinical research.
Healthcare research needed a different approach. It has been too slow, too expensive, not always answering the important questions. Healthcare decision-making is always informed by evidence. Health outcomes and disparities were not improving. Change was needed, but how?
PCORI answered with a national system addressing the problems of traditional clinical research that continuously learns and grows in quality and efficiency. ASU’s Center for Health Information & Research (CHiR), directed by George Runger, PhD, contributes claims and clinical data from its repository of health information as a member of the Patient-Centered Network of Learning Health Systems (LHSNet), a PCORnet Clinical Data Research Network (CDRN).
LHSNet is comprised of 12 million patients across seven member institutions, led by the Mayo Clinic. The network provides expertise to support research that improves health and health care in ways meaningful to its ethnically and socioeconomically diverse patient population, their families, and providers.
- Population health
- Managing large clinical databases
- Clinical trials
LHSNet is operating under a three-year award of more than $8.6 million from PCORI.
According to Runger, “Our patient population is one of CHiR’s key assets that benefits LHSNet and PCORnet.” With Arizona being home to large numbers of Hispanics/Latinos and Native Americans, CHiR brings a unique diversity of patients to all types of research studies. Electronic medical records from local community health centers and Maricopa County’s public teaching hospital enrich the data from Arizona Medicaid.
CHiR also has a long history of joining forces with local health provider organizations to improve health and health care in Arizona. “We are excited about taking our data sharing relationships to the national level and engaging local providers in new research opportunities that will benefit their patients.”
LHSNet conducts research internally among its member institutions and at the PCORnet level. PCORnet creates the infrastructure, tools and policies to support rapid and efficient research. PCORnet embodies a “network of networks” made up of:
- 13 Clinical Data Research Networks
- 20 Patient-Powered Research Networks
- 2 Health Plan Research Networks
- Coordinating Center
Together, they represent more than 128 million patients with medical encounters over the last five years. Additional cross-network Collaborative Research Groups composed of content experts and niche Research Interest Groups intensify the research power of PCORnet.
PCORnet data comes from multiple sources, including:
- Electronic health records
- Insurance claims data
- Data reported directly by people
- Medicare data
- Other sources
The data is organized under a Common Data Model to precipitate faster data analysis and allow each network to use different platforms and yet share information under common definitions. Capacity is building every day as PCORnet seeks new ways to enhance the data and expertise it offers.
The door is open and ASU welcomes potential investigators, patient groups, healthcare organizations, clinicians and clinician groups, government, industry scientists, and sponsors to leverage LHSNet’s and PCORnet’s unique infrastructure and collaborate on patient-centered clinical research from study development to planning to implementation.
- Answer pre-research questions
- Conduct efficient, trustworthy clinical research underpinned by a Common Data Model
- Collaborate with network members
- Access ~128 million patients with medical encounters
- Make better-informed health decisions
- Save money and time