Except for one or two trips to Cleveland, William receives his care and experimental medications from his current oncologist near Buffalo. Reports regarding tumor response and side effects of the treatment are automatically extracted from the EHR and sent to Dr. Kelly and the study nurse coordinator in Cleveland for review. Not only have William and Dr. Kelly been matched at low cost and almost without friction, but the trial is being monitored remotely without the need for paper files.
The benefits of building this type of intelligence into the health-care records system are obvious. Patients get access to the newest treatments; researchers can conduct trials more efficiently; and those who pay for these trials — largely the pharmaceutical industry and the taxpayers supporting NIH — can expect better results at a lower cost. In addition, the available pool of cancer patients for trial recruitment is richer and more easily identified.
Linking community oncologists with the research enterprise will enable them to become true customers of research, giving them ready access to the rapidly expanding body of medical understanding that can improve their practice. It has been well documented that there are disparities between new research evidence, particularly those involving effective medical interventions, and the general state of clinical practice. Outdated therapies persist despite new findings; advances in medical knowledge and treatment capabilities can take years to reach patients.
To be sure, physicians are supposed to base their practice on the evidence of new research studies, as published in the academic peer-reviewed literature. But there are thousands of journals publishing many thousands of articles each year. It is almost impossible for busy clinicians to keep up with the abundance of new information coming from the scientific community. Physicians are often influenced more by the practice habits of local colleagues in their social networks than by the evidence-based literature. So although evidence-based medicine is the foundation of sound judgment and quality care, there are significant challenges to infusing this evidence into clinical practice.
If practitioners were linked with research networks and cutting-edge evidence, patients (and their insurers) could be reassured that they were receiving the most appropriate care for their medical condition. Evidence-based medicine would also reduce variability in practice and contribute to improvements in the quality of care in other ways. Physicians are more likely to refer patients to clinical trials when research results will be readily shared with the referring physicians.
All of this is technically feasible, and yet, like so many other forms of innovative infrastructure, a “research web” connecting laboratories to community physicians remains a vision for the future. But progress toward this goal is accelerating. In 2004, President George W. Bush called for the widespread adoption of electronic health records by 2014. He also appointed Dr. David Brailer as the national coordinator for health information technology in an effort to jump-start the vision. Dr. Brailer modified existing conceptual frameworks to describe two important concepts that would facilitate the achievement of the president’s goals — a national health information network (NHIN) and regional health information organizations (RHIOs). The NHIN can be thought of as a national infrastructure designed to support connectivity and information flow among health-care organizations, professionals, and citizens across the country. RHIOs are the local governance structures that foster EHR adoption and interoperability in communities.
Currently, RHIOs tend to focus on connecting community doctors, hospitals, labs, and pharmacies in the service of everyday care. Their role in supporting research is often overlooked.
But it wouldn’t take much to extend the RHIO concept to include the creation of “research RHIOs.” These local organizations could focus on connecting the network of community caregivers with the network of cancer researchers, using caBIG as their medium. (Of course, these projects would have to be careful to safeguard the privacy of patients and would need to comply with privacy rules mandated by the U.S. government’s 1996 Health Information Portability and Accountability Act.)