UC San Francisco is convening some of the world’s foremost thought leaders for a two-day summit to chart the course of precision medicine, an emerging field aimed at revolutionizing medical care.
The approach, which is still evolving, would harness the wealth of data available from the human genome and the subsequent wave of research into the molecular basis of disease and integrate it on both a personal and global level with information on environmental factors and patients’ electronic medical records.
This data would then inform both laboratory research and clinical care, and ultimately lead to better and more personal and predictive care.
While often used synonymously, “personalized medicine” – using advanced tools such as genetic screening to guide an individual patient’s treatment – is just one aspect of precision medicine.
Precision medicine involves the creation of a dynamic infrastructure in which the patient would be the linchpin – where patients’ health information (including genetics, blood test results, responses to medications and reactions to therapies) would be accessible to scientists – and where discoveries made in the laboratory could inform patient care.
Simply put, the practice of precision medicine would allow scientists to share emerging research findings faster, drug companies to develop more precise therapies, and clinicians to make more informed decisions about treatments that would ultimately improve care, save lives and reduce health care costs.
Transforming the Future of Medical Discovery
Precision medicine was put forth as a concept in 2011 with the release of a National Academy of Sciences (NAS) report that called for the creation of a Google maps-like “knowledge network” that would be centered on a dynamic, interactive data repository, or “information commons,” that, like Google maps, would link layers of data to reveal information.
The report, titled “Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease,”was the result of a one-year study conducted by an NAS committee co-chaired by UCSF Chancellor Susan Desmond-Hellmann, MD, MPH, and Charles Sawyers, MD, a Howard Hughes Medical Institute investigator and the inaugural director of the Human Oncology and Pathogenesis Program at Memorial Sloan-Kettering Cancer Center at the special request of Francis Collins, MD, PhD, director of the National Institutes of Health.
Desmond-Hellmann noted the current disconnect between the wealth of scientific advances in research and the incorporation of this information into the clinic, as well as the fact that researchers don’t have access to comprehensive and timely information garnered from patients in the clinic.
“Opportunities are being missed to understand, diagnose and treat diseases more precisely, and to better inform health care decisions,” she said.
Keith Yamamoto, PhD, vice chancellor for research at UCSF who served on the NAS committee, is among scientists who consider precision medicine the next revolution in health care. He said the NAS proposal on precision medicine is as significant as the NAS advisory board recommendation that the “United States go forward with the Human Genome Project.”
Advancing Precision Medicine
UCSF is hosting the two-day OME Precision Medicine Summit in May to bring together more than 150 thinkers, creators and innovators from bioinformatics to biotech and from economics to genomics to take action as recommended in the NAS report.
Summit participants will focus on four areas that are integral to advancing precision medicine: data, discovery, health and care, and stewardship. UCSF’s three major goals for the summit are to advance precision medicine by:
- Solidifying a network of people across multiple sectors and organizations who are committed to the cause;
- Designing actionable experiments and initiatives that will be implemented after the event; and
- Launching an entity to guide, support and help integrate ongoing efforts.
To help organize and facilitate the summit, UCSF has engaged the services of IDEO, (pronounced “eye-dee-oh”) a global design firm that takes a human-centered, design-based approach to help public and private organizations innovate and grow.
Participants in workgroups at the summit will use IDEO’s “design thinking” concepts to identify what is needed to make precision medicine a reality. These necessary elements range from developing sophisticated data network technology, hammering out issues of intellectual property, investing in public-private partnerships and addressing federal regulations governing access to patient data and approval of new drugs.
Protecting Patient Privacy
One of the thorniest issues is how to make patients’ electronic medical records readily available to the scientific and medical community on a global scale while preserving confidentiality, said Bernard Lo, MD, a UCSF bioethicist and a member of the NAS committee.
“The complexity and potential impact of such a network requires that the scientific community, together with the public, patient representatives, and disease advocacy groups, carefully consider privacy and consent issues, oversight of such research projects, validation of the clinical significance of discoveries, and pre-competitive collaboration among industry and academic researchers, and data sharing,” Lo said when the NAS report was released.
The summit is an important opportunity to build public awareness and trust for moving precision medicine forward and for participants to collaboratively develop short- and long-term initiatives to advance the field on a global scale.
“By design the event will be collaborative, connecting brilliant thinkers to catalyze meaningful change; generative, turning the conceptual into the concrete; and empowering, championing the most compelling ideas to change the world of health and the health of the world,” said Desmond-Hellmann.