Within the healthcare industry, precision medicine often is approached as a research endeavor, while value-based care transformation is framed as a business or operational initiative. However, one bioinformatics thought-leader asserts that precision medicine and healthcare transformation are highly synergistic and intrinsically linked, and are, at their core, data-centric issues. And, to deliver on the promise of precision medicine and value-based care, healthcare leaders essentially need to change how they approach data sharing and analytics, according to Philip Payne, Ph.D., founding director of the Institute for Informatics at Washington University School of Medicine in St. Louis, during a recent webinar presented by Healthcare Informatics.
“For both precision medicine and value-based transformation, it’s about capturing critical data aspects to treat patients as individuals and to improve value, safety and outcomes,” he said during the April 19 webinar. The full webinar can be accessed here.
Payne, previously professor and chair of the Department of Biomedical Informatics at The Ohio State University, shared his perspective on how interoperability and data sharing powers both precision medicine and value-based healthcare and why now is the time to focus on these two data-centric issues.
“How do we look at the very synergistic areas of both precision medicine and value-based transformation of healthcare from the perspective of data integration, data analytics and biomedical informatics? You need a systems-level approach to these problems, which are really driving everything from research through to the operations and financial dimensions of modern healthcare delivery systems,” he said.
Payne has also led the formation of Signet Accel, a data analytics company, and during the webinar he briefly touched on the development of the company’s Avec platform, which is a federated data integration platform.
The ability for the healthcare and life sciences industries to accelerate discovery, improve care to patients and scale precision medicine to a population level is predicated, Payne said, “on our ability to use all the data we produce every day in the healthcare system, data that is often locked away or difficult to access.”
Payne first outlined that precision medicine and healthcare transformation are both change agents and are the primary drivers in advancing treatments, improving care and finding cures. Essentially, precision medicine is about moving beyond “averages” to treating the individual, he said. However, in order to see improved health outcomes from the use of precision medicine, healthcare organizations need access to data beyond what is in the electronic health record (EHR).
“Using data, and doing it at a systems level, this is fundamentally shaping our thinking about high quality, cost-effective and efficacious care for patients. We need data at our fingertips. It’s not enough to have what’s in the EHRs or lab systems. We need to be able to integrate it on demand to make these decisions better, smarter and faster with improved outcomes for patients,” Payne said.
Simultaneously, the healthcare sector is going through tectonic changes in terms of policy, reimbursement and business incentives, described as both value-based care and healthcare transformation. “At its core, it’s really about using the data we have to improve the value, safety and outcomes of care,” he said.
A key part of value-based care is about keeping healthy patients healthy, and more effectively intervening with the high-cost, unhealthy patients, he said. “We know, based on the data, that [high cost, unhealthy] category is around 5 percent for any given disease, but consume up to 90 percent of healthcare expenditures for that disease state. In those patients, how do we understand the ability to give those patients the right treatment first, so they don’t become more costly or unhealthier? These are intrinsically data-centered problems.”
How do leaders within the U.S. healthcare industry prepare for this changing environment? “How do we improve the health of individuals and wellness of communities? How we deliver better, faster, cheaper more efficacious care to individuals?” Payne asked. Reaching that goal of improving value, safety and patient health outcomes will require a new approach to clinical practice, research, patient engagement and the business of healthcare, he said.
What’s more, healthcare provider organizations have a critical role in preparing for this changing environment, he noted. “It’s about rethinking how we approach data sharing and how we share data across borders to bring together these disparate data sources and support precision medicine and healthcare transformation efficiently and effectively. Fundamentally it comes to using the data we have to match patients with best possible prevention or treatment strategies, it’s about marshaling the data we collect but looking at it at a systems level and not transactional.”
And, he reiterated that data found in EHRs will not be enough. “Recent studies have shown that if you look at the full spectrum of data that is required to focus on outcomes, cost and quality, at best, 40 percent of that data comes from the EHRs. That means more than half of the data that we need to make intelligent decisions are not in the EHRs. There are data in other systems, financial systems, pharmacy systems, they are in databases in patient reported outcomes, resources that tell us about social, demographic and other determinants of disease, about the environments in which patients live, not just assets that we just own. These are assets that exist beyond our walls. How do we bring that data together, and make decisions based on the data at our fingertips?”
A significant challenge is that the majority of this data sits in silos, he said, and is not integrated or accessible. “The issue of data integration becomes one of the most important in achieving this vision of precision medicine and value-based transformation,” he noted. And, even if organizations can overcome technical barriers, there are still other barriers, such as the business, social and regulatory frameworks that often prevent sharing of data across organizational boundaries.
He said, “I would argue one of the fundamental barriers to sharing data is an issue of a loss of control. If we pass our data to a centralized repository to integrate it, we are also losing control of that data, and given that regulatory environment, our ethical compact with patients, the business interests, that loss of control is often insurmountable.”
He added, “We need the ability to share data that allows the people that generate data, or are data stewards, to ask and answer those data questions, and that’s an argument for federated data sharing, to allow data to live where its produced and allow data producers or stewards to make policy-based decisions and have the technology tools to implement those policies to share and use data across boundaries on demand.”
To this point, he urged healthcare provider organization leaders to “rethink your approach to data sharing, interoperability and data analytics, and begin pursuing precision medicine and value-based transformation as dual and highly synergistic goals that are, at their core, about leveraging data assets and answering and asking these critical questions.”
Despite the challenges, Payne offered an optimistic overview of work currently underway to overcome these barriers, such as the development of large data sharing networks that enable continuity of care and pragmatic research by linking outpatient and inpatient data assets, as well as patient-reported outcomes. “I see a movement away from centralized data assets toward federated models that bring together disparate data sets to enable people to volunteer their data,” he said. “There are projects happening right now, they are innovative and they are opportunities to learn and advance our abilities to use the data that we have.”
Looking ahead at the future of precision medicine and healthcare transformation and the potential for data-sharing, Payne said his vision is for the healthcare industry to shift from viewing data as a depleteable, limited asset to, rather, a “liquid,” reusable and accessible asset. “Where every time we use data, its quality improves, we understand it better and we generate new insights,” he said.
Achieving this vision requires technology and as well as an understanding of the social, cultural and policy-based dimensions that bring together data sharing across traditional boundaries, he noted. Fundamentally, he said, a “data- and analytics-first” mentality will be essential to transform to a data-driven healthcare system that is precise and focused on value, quality, safety and outcomes.