UPMC Conference on Accelerating Stakeholder-Driven PCOR/CER in a Learning Health System

The Key to Building a Learning Health System? Patient-Centered Outcomes Research

Creating a learning health system is essential for value-based, patient-centered care. But starting any transformation initiative can be daunting. Patient-centered outcomes research is one of the best ways to build the foundations of a successful learning health system and quickly translate conclusions to every-day care practice.

In the transition from fee-for-service to value-based care, it’s crucial that health systems understand what treatments and interventions can achieve positive, meaningful health outcomes for patients. To achieve this aim, health industry leaders are looking to implement learning health system models, which continuously generate insights, data, and evidence and consistently integrate them into patient care.

A critical, foundational element of a learning health system is research. Research provides the scientific rigor needed to ensure medical practices and interventions are safe, effective, and evidence based. Traditional medical research, such as clinical trials or decades-long longitudinal studies, are the cornerstones of many large health systems and are essential for testing new drugs, examining the natural course of a disease or identifying health risk factors. But in the time it takes to translate these findings into practice, important opportunities for improving patient outcomes can be lost.

So how might a health system incorporate research rigor into their systems, processes, and care delivery? The answer… patient-centered outcomes research.

How health systems can benefit from patient-centered research

As one would expect, patient centered outcomes research (PCOR) focuses on the patient experience and homes in on questions that reflect patients’ values, preferences, and care decisions. The goal is to give patients the information they need to make informed decisions about their care. For instance, perhaps a patient wants to avoid certain medication side effects even more than certain symptoms of their condition. PCOR gives insight into which treatment is best for that patient given their values and needs. Patients and other health care stakeholders are engaged in various ways throughout the research process, ensuring that the results are meaningful and relevant to them.

Similarly, comparative effectiveness research (CER) encompasses studies that are designed to understand what works best for an individual patient given their unique characteristics and improve patient-centered care. This research may include comparisons of different clinical intervention programs, but also community and public health initiatives. For example, a CER study may investigate whether an intervention is most effective when delivered in-person at a clinic versus through a digital approach such as a mobile app or web portal.

PCOR and CER differ substantially from traditional medical research. Since traditional medical research is generally (and rightfully) conducted in controlled environments where participants must meet very specific eligibility criteria, the results can often be difficult to translate into useful knowledge for every day care or to implement with the diverse patient populations that exist in the real world.

PCOR and CER, on the other hand, are conducted in real-world settings where barriers and facilitators to effective implementation can be tracked, measured, and even used to improve interventions and/or the design and execution of the study. This lends an immediacy to the results, allowing for ready adaption into the policies, processes, and procedures of care delivery. Furthermore, PCOR takes a more stakeholder inclusive approach to study design, ensuring that patients’ priorities and outcomes of interest are fully considered. As a result, the conclusions drawn from PCOR and CER are patient-centered, meaning study interventions and outcomes are both useful and valuable for individuals similar to the study population.

Barriers to adopting patient-centered outcomes research

So if patient-centered research is such a great way to start building a learning health system, why isn’t it more widely used? A few reasons come to mind:

  • Lack of awareness: Generally, payers, providers, patients, and other stakeholders are not familiar with PCOR and CER methods. For example, some payers question the alignment of PCOR and CER priorities with their evidence needs related to certain quality and cost measures. Other health care stakeholders have noted the need to disseminate research findings more quickly and in ways that are available and understandable to patients, their families, and communities.
  • Lack of experience: The methods and tools that can facilitate PCOR and CER in health systems are not often well understood by the health care professionals who work in them or the patients they serve. Although experiences of pioneering learning health systems can be looked to as case studies to emulate and advance understanding, currently there are relatively few ways to broadly disseminate this information.
  • Lack of strategy: Without a clearly articulated, stakeholder-driven strategies for accelerating PCOR/CER in health systems, progress in creating a continuously learning health system can be slow. Patients, providers, payers, and communities need to champion coordinated and near- and long-term actions to achieve true transformation.

To learn more about using patient-centered outcomes research to build a learning health system, join the UPMC Center for High-Value Health Care and the Wolff Center at UPMC for a day-long conference on May 7, 2019. Learn more and register here.