Our Big Idea for Big Data: A National Patient-Centered Clinical Research Network

Talk about “Big Data” is common lately, especially in healthcare. After all, there are few fields where more data are collected and used on a daily basis – and where there is such widespread agreement that we aren’t doing a good enough job of using this information to improve patient outcomes.

Many have tackled this challenge and made varying degrees of progress. But with all of the complex issues faced daily by patients and those who care for them, we know much remains to be done.

Many of us recognize that, as a nation, the way we conduct healthcare research isn’t sustainable. Research budgets are tightening, the cost of clinical trials is accelerating, and new data are revealing ever greater nuance and in how we categorize and treat different subtypes of the same condition. In short, we have more research questions than ever before, and few good answers.

For research to more effectively serve patients, we need a new model that brings healthcare systems, clinicians and patients themselves fully into the process of developing, governing, and using the data needed to better support personalized medical decision-making.

Even building on the best work done by others, this will be no easy task. But we think our newest initiative, development of a National Patient-Centered Clinical Research Network supported by $68 million in initial funding from PCORI, is a major step in the right direction. Our vision is for this initiative to provide a much-needed national data infrastructure to advance patient-centered comparative effectiveness research.

We announced plans for this concept on April 23 at the National Press Club in Washington, D.C., with a panel discussion featuring representatives from leading stakeholder groups across the healthcare community. The panelists discussed the unique value our investments can provide to patients and those who care for them, and the challenges we face in reaching our goal, including such issues as technical and data-sharing standards, system interoperability, and patient privacy and security. You can watch an archived webcast of the discussion on our website.

Because the network we propose will involve researchers, health systems, clinicians, patients and other key stakeholders from the outset, we think it will be better suited to capitalize on the vast storehouses of valuable healthcare information that are waiting to be collected, analyzed and transformed into meaningful discoveries.

We launched this effort by releasing two new funding announcements. Funding will go towards creating a series patient networks and health systems networks that will comprise the overall national network.

We’ll provide up to $12 million to fund the creation of 12-18 patient powered research networks (PPRN). Each will consist of motivated patients that are focusing on a specific disease or condition. We will also provide up to $56 million to create up to eight clinical data research networks (CDRN). Each of these will be comprised of multiple health systems with the capacity to connect and share large amounts of de-identified electronic health records (EHR) data.

Once formed, the PPRNs and CDRNs increasingly will work together to establish, test and refine models for data-driven patient-centered research projects. We’ve created a summary document that describes the national network concept, as well as a synopsis of the two funding announcements. I encourage you to review this material to learn more.

PCORI is one of the only biomedical research organizations with the resources and capacity to create a national data infrastructure, and we take this responsibility seriously. Indeed, we see this as one of the two mandates Congress had in mind when it authorized PCORI’s creation -- to rapidly increase the volume and quality of the information available to patients and those who care for them when making a clinical decision, and to meaningfully improving our nation’s capacity to conduct effective CER.

We look forward to watching this initiative grow and evolve with the input, support and involvement of our entire stakeholder community. We hope the end result will be an enduring, sustainable national research network that serves the interests of patients for decades to come. I invite your thoughts on this vision. And I certainly hope many of you will consider applying for the funding we’re dedicating to try to make it a reality.