Favorable patient outcomes are what every manufacturer, distributor, healthcare provider and patient looks for today, particularly as reimbursement shifts from fee-for-service to fee-for-value. But it’s impossible to gauge patient outcomes without … patients.
PCORnet is an initiative of the Patient-Centered Outcomes Research Institute that aims to engage patients and others in the healthcare community in research to produce clinical knowledge that will improve healthcare.
“As the healthcare industry becomes more patient-centered, clinical researchers will need to work closely with patients to assist them in finding answers to critical health questions,” wrote Adrian Hernandez, M.D., MHS, director of outcomes and health services research, Duke Clinical Research Institute, in a 2015 blog. By involving hundreds or thousands of people and health networks via the Internet, patients can inform researchers about what matters most to them and their families, he said. “In turn, researchers can design trials that focus on the clinical outcomes most meaningful to patients.
“Study designs tailored to reflect patient value build trust throughout the entire research enterprise.”
Well-intentioned, but slow
Responding to questions from Repertoire, Hernandez said, “Our country’s current clinical research system is well intentioned, but it continues to be inhibited by several key shortcomings: It is too slow, too expensive and, most importantly, it does not generate the evidence we need to help people answer the critical healthcare decisions they face. That’s because often less than 5 percent of Americans participate in clinical trials, which drive most of the decisions our doctors make, like what treatment to recommend and the process for follow-up. These trials also tend to have strict inclusion criteria, meaning they often recruit groups of people that do not reflect our nation’s diversity.”
PCORnet is a network through which researchers can access – under strict privacy and security protections – large sets of health and healthcare data gathered in real-world settings, such as clinics and hospitals, he says
“By tapping into and standardizing electronic health records, insurance claims data, data reported directly by people, and other data sources, PCORnet offers researchers something they have long been seeking – a powerful national evidence generation network with the infrastructure, tools, and policies to support rapid, efficient clinical research,” says Hernandez. “PCORnet is also distinguished as the first network of its kind to involve patients as well as those who care for them in a substantive way – in fact, patients are central to the governance structure of PCORnet and are also key in determining what research questions will be studied.
“For medical product manufacturers and healthcare providers, PCORnet translates to an unprecedented level of insight into how the products they make and recommend perform over time based on a massive pool of patients that is highly representative of our nation’s population.”
Projects in the works
The foundation of PCORnet is its Distributed Research Network – a group of 20 Patient-Powered Research Networks that are motivated to play an active role in clinical research; and thirteen Clinical Data Research Networks, which represent health systems partnering to conduct research as a network.
Patient-Powered Research Networks include Interactive Autism Network, Multiple Sclerosis Patient-Powered Research Network and NephCure Kidney International. Health systems participating in the Clinical Data Research Networks include Chicago Area Patient Centered Outcomes Research Network, University of Kansas Medical Center, PEDSnet–A Pediatric Learning Health System, and Weill Medical College of Cornell University.
PCORnet’s first demonstration project is called ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-Term Effectiveness). Seven PCORnet partner networks are investigating the effect of two different aspirin doses given to prevent heart attacks and strokes in high-risk patients with a history of heart disease. A second project is examining three common types of bariatric surgery: gastric bypass, adjustable gastric banding and sleeve gastrectomy. A third project, on childhood obesity, looks at the relationship between antibiotic use in the first two years of life and weight gain in later childhood.
For more information about PCORnet, visit www.pcornet.org.