Slow Food, Fast Food, or Perhaps a Bit of Both?

Slow Food, Fast Food, or Perhaps a Bit of Both?

Peter Paul Yu, MD, FASCO, FACP

Jun 07, 2011

The ASCO Board has embraced the concept of the Rapid Learning Health Care System (RLHS), the vision of a national digital health information system that enables sharing of data between individual health care providers and patients as well as populations of healthy individuals who are at identifiable high risk of disease. Much of the energy and resources of the Society will be devoted toward building out the knowledge bases, apps, and social networking capabilities that will breathe life and give shape to this new model where information exchange and decision making occur at a pace commensurate with the digitally connected society that we live in today.

How does one relate an RLHS to the slow, deliberate pace of translational and clinical trials-based research and to the Society’s core values and culture?  Notwithstanding the NCI’s Clinical Trials Working Group blueprint to improve the efficiency of the clinical trials enterprise, translational and clinical trials research must be conducted in a slower scientifically rigorous manner that emphasizes high-quality data in well-defined cohorts of patients that are narrowly structured to allow precision and clarity to be hallmarks of study findings. The research conducted by cancer centers, cooperative groups, and pharmaceutical industry are essential and form the knowledge base bedrock of the RLHS.

The RLHS is largely, although not solely, about the dissemination and application of clinical trials generated knowledge into health care delivery systems in the most efficient, optimized manner.  For example, we need to understand how best to replicate clinical trial findings in the real world where patients are not subject to exclusion criteria and instead fully reflect a spectrum of comorbidities, receiving care in health care delivery settings that differ from university clinics. We need to ensure that complex, ever expanding knowledge bases such as genomics and proteomics biomarkers that provide critical guidance for selection of therapies are applied to individual patients at the points of care and decision making. The RLHS is democratic, allowing patients and families to participate in knowledge generation through patient-reported outcomes data and providing guidance about health-related areas of research that are of the most interest to them. Quality affordable cancer care leading to improved outcomes is a core value of ASCO and its members that is enhanced by an RLHS.

The knowledge derived from an RLHS should not be considered scientifically unsound because it is not based on randomized controlled trials. Rather scientifically sound research techniques from the social sciences will be applicable here, approaches to learning that we are not well-versed in. The fusion of translational and clinical trials research with  research using the approaches of economics, health care policy, and systems research, and infused with a new source of primary data arising from all patients and all ASCO members collected through a national digital health information infrastructure, is a transformational leap forward. We must not let our fear of disruptive change prevent the cultural change that is necessary within our Society to succeed in building the Rapid Learning Oncology Care System.


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