IDASH Projects: Protecting Privacy and Patient Rights in the Name of Scientific Progress

In the years since the best-selling book “The Immortal Life of Henrietta Lacks” made the issue of informed consent and patient privacy a national topic of conversation, scientists and clinicians have continued to struggle to develop a comprehensive methodology for collecting and sharing data from patients and research subjects without jeopardizing their rights.

The University of California, San Diego’s iDASH project aims to address some of these fundamental challenges to research progress with its most recent series of “Driving Biological Projects” (DBPs) … Read the full story from the UCSD Newsroom


Dr. Lucila Ohno-MachadoLead investigator in the iDASH project is Lucila Ohno-Machado, MD, MBA, PhD, professor of medicine, founding chief of the Division of Biomedical Informatics and associate dean for informatics and technology at UC San Diego.

Among other research and education projects directed by Dr. Ohno-Machado are the Biomedical Research Informatics for Global Health training program and the biomedical informatics component of the UC San Diego – Universidade Eduardo Mondlane Medical Education Partnership Initiative.  |  See all DBMI research projects

Dr. Ohno-Machado joined the UC San Diego faculty from Harvard Medical School in 2009. She was elected to the American Society for Clinical Investigation in 2010.

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Next Generation: Thomas Ohno-Machado Lobbies for Federal Research Funding

One in a Series of Occasional Stories About Faculty Members’ Children

Dr. Lucila Ohno-Machado and Thomas Ohno-Machado with Senator Barbara Boxer Lucila Ohno-Machado, MD, PhD; her son Thomas and California Senator Barbara Boxer.

Recently, to his mother’s wonderment, 17-year-old Thomas Ohno-Machado revealed that he is interested and quite active in politics.

It seemed to happen overnight, his mother said, and without any particular encouragement from his parents. “It doesn’t run in the family,” she mused.

Thomas, a senior at Torrey Pines High School, is the oldest of Dr. Lucila Ohno-Machado’s three sons. Lucila Ohno-Machado, MD, PhD, is associate dean for informatics for the UCSD School of Medicine and professor and chief of the Division of Biomedical Informatics in the Department of Medicine.

Thomas is now the founder and president of the Torrey Pines High School Autism Awareness Club and an advocate for children with disabilities. He and his friends have successfully organized a funding drive and raised money to benefit a local school for children with special needs.

One day out of the blue Thomas asked Dr. Ohno-Machado, “Mom, can we go to Washington, DC?”

It turned out he had written to Senator Barbara Boxer’s office and arranged to visit and express his concerns about federal support for biomedical and behavioral research, particularly for the National Institutes of Health, and for the increasing numbers of children who have special needs.

Dr. Ohno-Machado agreed to go. She arranged for him to add a one-day visit to Washington DC to a trip she had already scheduled. He purchased his first suit, from Macy’s, and carried it on the plane so that it would not wrinkle in flight.

She suggested he prepare for his audience with the senator, and he assured her, “Don’t worry.”

They arrived at Senator Boxer’s office and, with the Archbishop of California and a California judge who had come in with them, waited their turn to speak with one of the senator’s staff members.

The time came. Prepared with statistics to back him up, Thomas Ohno-Machado expressed his concern and asked to know what the senator was going to do about federal medical research funding and the rising numbers of special needs children in the United States.

The senator’s staffer responded by showing Thomas documents detailing how Senator Boxer and another senator are addressing these issues.

Said Dr. Ohno-Machado of the meeting, “I didn’t speak a single word.”

She and Thomas had tried but weren’t able to set up a visit to California Senator Diane Feinstein’s office on the same trip. In a separate solo trip, Thomas visited the governor of Massachusetts and a school for special needs children in the Boston area. Recently, he pressed his causes at the San Diego mayor’s office.

He is headed to UC Santa Cruz this fall. He plans on a political career.

Dr. Ohno-Machado is still marveling at how a strong interest can reveal itself so suddenly in one’s offspring.

“He’s very excited about it,” she said. “He has a bright future.”

UC San Diego Health System Named One of the Nation’s 100 Top Hospitals by Truven Health Analytics

UC San Diego Medical CenterUC San Diego Medical Center in Hillcrest

University of California, San Diego Medical Center has been named one of the nation’s 100 Top Hospitals® for the second time by Truven Health Analytics, formerly the health care business of Thomson Reuters. Truven Health Analytics is a leading provider of information and solutions to improve the cost and quality of health care. … Read the full story from the UCSD Newsroom


DELPHI Project Foretells Future of Personalized Population Health

NSF awards $2 million over four years to UC San Diego computer scientists and physicians

Imagine a new type of healthcare app that does it all – it helps you understand your current health status, assists you in making changes in your life to improve your health, and takes into account the perspective of your entire life history, others in your age group–and perhaps even your neighborhood– who share similar characteristics.

That’s the vision put forward by a team of physicians and computer scientists at the University of California, San Diego who are collaborating on a new digital resource that would take advantage of advances in databases, cyberinfrastructure and machine learning to usher in a new era of health and health care…. Read the full story from the UCSD Newsroom


Dr. Lucila Ohno-MachadoLucila Ohno-Machado, MD, PhD, FACMI, is an investigator on the project, whose title is “Data E-platform Leveraged for Patient Empowerment and Population Health Improvement (DELPHI).”

Dr. Ohno-Machado is professor of medicine and founding chief of the Division of Biomedical Informatics. She directs, among other projects, another UCSD biomedical cyberinfrastructure, the Integrating Data for Analysis, Anonymizing and Sharing (iDASH) project. IDASH is a National Center for Biomedical Computing under the auspices of the NIH Roadmap for Bioinformatics and Computational Biology. Under AHRQ funding, she directs the related project Scalable National Network for Effectiveness Research (SCANNER).

Dr. Ohno-Machado’s research specialty is predictive modeling with an emphasis on calibration methods that combine phenotype and genotype/gene expression data for personalized medicine.

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UC San Diego Health System Highlighted in Healthcare Equality Index 2012

Named as “Leader in LGBT Healthcare Equality” by National Survey

UC San Diego Health System has been recognized as a “Leader in LGBT Healthcare Equality” in the Healthcare Equality Index 2012 report, an annual survey conducted by the Human Rights Campaign (HRC) Foundation. The academic health system earned top marks for its commitment to equitable, inclusive care for lesbian, gay, bisexual and transgender (LGBT) patients and their families, who can face challenges in accessing adequate health care. … Read the full story from the UCSD Newsroom