UCSF Helps Launch NIH Precision Medicine Cohort Program

California Precision Medicine Consortium Will Help Enrollment for Obama Effort

By Laura Kurtzman

illustration of human silouettes on top of a U.S. map

UC San Francisco is helping to launch a landmark effort by the National Institutes of Health to engage 1 million or more U.S. participants in research aimed at preventing and treating disease based on individual differences in lifestyle, environment and genetics.

Four University of California medical centers that are part of UC Health – UCSF, UC San Diego, UC Irvine and UC Davis – have joined with Cedars-Sinai Medical Center, San Diego Blood Bank, and the University of Southern California to form the California Precision Medicine Consortium. They are the first regional medical center enrollment sites announced in California to be part of the national network of health care provider organizations (HPOs) that will implement the Precision Medicine Initiative (PMI) Cohort Program, joining awardees announced earlier this year.

Atul Butte
Atul Butte, MD, PhD

“California has been unique as a state in investing in precision medicine, so I am really pleased that California residents will soon be able to join the NIH PMI Cohort Program through their health care provider organizations,” said Atul Butte, MD, PhD, executive director of clinical informatics at UC Health. A professor of pediatrics, bioengineering and therapeutic sciences, as well as epidemiology and biostatistics at UCSF, Butte will be a co-principal investigator of the new NIH grant. He is also principal investigator on the state-supported California Initiative to Advance Precision Medicine.

Step Toward Making Precision Medicine a Reality

Participants in the PMI Cohort Program will be invited to contribute a range of data about themselves by completing questionnaires, granting access to their electronic health records, providing blood and urine samples, undergoing physical evaluations and sharing real-time information via smartphones or wearable devices. The privacy and security of the data will be safeguarded.

[The program's] success will depend on community engagement, including both patients and healthy people who become convinced that their contributions will benefit the health and well-being of themselves, their children and their grandchildren.

Keith Yamamoto, PhD

Director of UCSF Precision Medicine

“This is an important step toward making precision medicine a reality, and we are pleased to participate in this national effort through the California Precision Medicine Consortium,” said Keith Yamamoto, PhD, director of UCSF precision medicine and vice chancellor for science policy and strategy at UCSF. “Its success will depend on community engagement, including both patients and healthy people who become convinced that their contributions will benefit the health and well-being of themselves, their children and their grandchildren. California’s rich diversity will strengthen the national effort.”

President Barack Obama announced the Precision Medicine Initiative, a full set of White House programs, involving the NIH, the Food and Drug Administration, the Office of the National Coordinator for Health Information Technology, and other agencies, in his 2015 state of the union address.

A primary aim of the PMI Cohort Program is to create a national resource for researchers, including citizen scientists, to help answer important questions about a variety of health conditions. When the program opens for enrollment, people may sign up either through a participating health care provider organization or directly by using the program website, smartphone application or call center.

Regional Medical Groups to Launch Nationwide

The California consortium will receive an initial $1.3 million and is one of four regional medical center groups around the country that are announcing awards on Thursday to begin recruitment and build infrastructure. Investigators for this consortium have been working together for years, building from initiatives such as the nationally recognized patient-centered SCAlable National Network for Effectiveness Research (pSCANNER) clinical data research network led by Lucila Ohno-Machado, MD, PhD, professor of medicine at UCSD, who is principal investigator of the new NIH grant, and the Athena Breast Health network, led by Laura Esserman, MD, MBA, professor of surgery at UCSF.

In addition to extending the NIH program’s geographic reach, the new awardees have expertise in engaging underrepresented groups in biomedical research. These include racial and ethnic minorities, as well as people with mental illnesses, substance abuse problems, developmental delays and cognitive impairments.

“We want this program to be open to everyone across the United States,” said Eric Dishman, director of the PMI Cohort Program. “These additional health care provider organizations will help us in our efforts to reach communities that have been underrepresented in research. By contributing their information, these communities will help people and their health care providers identify the right prevention strategies or treatments. With the PMI Cohort Program, we’re making a concerted effort to include people from all communities and walks of life, to make sure that the knowledge we gain benefits everyone.”

UC San Francisco (UCSF) is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. It includes top-ranked graduate schools of dentistry, medicine, nursing and pharmacy; a graduate division with nationally renowned programs in basic, biomedical, translational and population sciences; and a preeminent biomedical research enterprise. It also includes UCSF Health, which comprises top-ranked hospitals, UCSF Medical Center and UCSF Benioff Children’s Hospitals in San Francisco and Oakland – and other partner and affiliated hospitals and healthcare providers throughout the Bay Area.