co-development of novel agents entails unique challenges that are not encountered when developing single agents. Panelists and Forum members repeatedly asserted that new incentives, such as increased market exclusivity, are needed to encourage drug developers to overcome these obstacles. Many participants also stressed that interoperable informatics systems will be critical for making advances in cancer research and care.
Many of the comments voiced at the Summit centered around the goal of harnessing information technology to create rapid learning healthcare systems, in which data collected on patients can be used in real time to better tailor treatments and determine care that is the most effective with the fewest risks and costs. “The entire backbone of everything we do, for all stakeholders, will be in the area of information—gathering information in a quality way so health information exchange can take place in a real-time system,” said Dr. William Dalton, president, chief executive officer (CEO), and director of the Moffitt Cancer Center. He suggested building this information system so it is useful to researchers, patients, clinicians, policy makers, and administrators, all of whom are aiming to create an evidence-based approach that will make health care more affordable, more accessible, and of higher quality. “To do this we have to build an information system that has the ability to extract data and follow patients throughout their lifetimes…. The patients themselves are the centerpiece—we always need to come back and say what is best for the patient,” said Dr. Dalton. He added that “we can’t assume we know what patients want.” Many patients want to know what research is being done with their data and biological samples, so it will be important to create patient portals for information exchange, he said. The role of patient consent and information dissemination in research using patient databases was addressed in a recent IOM consensus report (IOM, 2009).
Citing the NCPF’s report on rapid learning healthcare systems (IOM, 2010b), Dr. Dalton said that it described the direction in which cancer research and care should be heading, adding, “It’s a grand idea, but it doesn’t exist yet and must be built in an iterative process.” He noted that the healthcare reform legislation will help foster a rapid learning healthcare system, with its support of accountable care organizations. These organizations provide a medical home for patients that consolidates healthcare providers and tracks the effectiveness of their care, making it