Big Data: Opportunities for Patients to Shape Health Research

I’ve told you a fair bit in recent months about PCORnet, our national patient-centered clinical research network initiative. This project seeks to harness the power of large amounts of health data, including from electronic health records and information reported by patients themselves, to help draw information from real-world clinical settings to conduct critical comparative clinical effectiveness research (CER) and other types of studies more quickly and cost-effectively.

Now I’m pleased to tell you about a new theme issue of the journal Health Affairs on using “big data” to transform health research. The issue includes several articles specifically about PCORnet and its constituent partner networks, and a number of others that take note of PCORI’s efforts to leverage health data to advance clinical research as part of a broader look at opportunities and challenges in this area.

Let me mention some of those articles, including one authored by Rachael Fleurence, PhD, who heads our CER Methods and Infrastructure program, and colleagues at PCORI.  That paper, which focuses on the Patient-Powered Research Networks (PPRNs) component of PCORnet, emphasizes one of the core principles guiding our work— meaningful engagement with patients and other healthcare stakeholders as we pursue our research agenda. In the case of PCORnet, patients will help set the rules under which the network operates and studies will be conducted.

As Fleurence notes, through PCORnet and the “big data” movement more broadly, patients and their families and caregivers have new opportunities to generate and contribute data and actively collaborate with researchers in prioritizing and answering clinical research questions. Other papers that you might find of interest include those authored by:

• Christopher Forrest, MD, of the University of Pennsylvania, Peter Margolis of the Cincinnati Children’s Hospital Medical Center, and their colleagues on how patient-centered approaches to big health data are being put into practice by two networks within PCORnet —ImproveCareNow, a PPRN focused on pediatric inflammatory bowel disease, and PEDSnet, a Clinical Data Research Network being developed to cover the full spectrum of pediatric disorders.
• Amy Abernethy, MD, PhD, Director of the Center for Learning Health Care, Duke Clinical Research Institute, Duke University, and colleagues on  the critical role of patient-reported outcomes for improving health research and care and the challenges in using PROs more broadly. Abernethy leads the PCORnet Patient-Reported Outcomes Task Force.
• Leslie Curtis, PhD, and Jeffrey Brown, PhD, co-leaders of the PCORnet Task Force on Data Standards, Security, and Network Infrastructure, and Richard Platt, MD, MS, Professor and Chair of the Harvard Medical School Department of Population Medicine at the Harvard Pilgrim Health Care Institute, and Co-Director of the PCORnet Coordinating Center. Their paper discusses how PCORnet and three other national initiatives to use big health data for research are the promising first stage in the development of the foundation for a healthcare system that will continuously apply lessons learned from research to improve care and outcomes.
• Harlan Krumholz, MD, a member of PCORI’s Board of Governors and Professor of Medicine and Epidemiology and Public Health at the Yale University School of Medicine, who reviews the challenges to realizing the full potential of using patient data in research, including the need to safeguard the privacy and security of sensitive information and ensure data used in research are valid, reliable, and standardized. Nonetheless, Krumholz says, the effort is essential.

We are PCORI are pleased to be among the supporters of this special Health Affairs issue. I’m happy to tell you that as part of that support, we’re making the full text versions of the five papers above available free of charge to visitors to our website.

We’ll have additional updates on PCORnet in the near future. In the meantime, thanks for your interest in our work.