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San Diego Researchers Playing Leading Role In Landmark 'All Of Us' Project

Dr. Lucila Ohno-Machado, a professor and chair of the Department of Biomedical Informatics at UC San Diego, is pictured in this undated photo.
UC San Diego
Dr. Lucila Ohno-Machado, a professor and chair of the Department of Biomedical Informatics at UC San Diego, is pictured in this undated photo.
San Diego Researchers Playing Leading Role In Landmark 'All Of Us' Project
San Diego Researchers Playing Leading Role In Landmark 'All Of Us' Research Project GUEST:Dr. Lucila Ohno-Machado, professor and chair of the Department of Biomedical Informatics, UC San Diego

An ambitious effort to speed up medical research by tremendously expanding the pull of research subjects has just gotten underway. It is called the all of us project. The goal is to get 1 million Americans to volunteer information about their health, genetic profile, and their lifestyles. Researchers believe the data will expand opportunities for truly personalized medicine to fight disease. KPBS mid-day addition host Maureen Cavanaugh spoke to Doctor -- Professor and chair at the Department of biomedical -- at UC San Diego health. >> Reporter: The all of this project was originally announced by President Obama back in 2015. Buddy doctors and researchers think it is needed ? >> many project so far have involved either very few people or people from a very similar background. So for example, White Mills a will represented in generic research. That females of older age, certain diseases, infants, children are not represented. This project will expand the opportunities to all of us participating. >> Reporter: How does that diversity expand the knowledge that you have? >> Currently, many diseases are treated like one-size-fits-all. If you have diabetes, you will start with the medication and if that doesn't work, you go to the next. This effort will try to understand why certain people do better with certain medications. Or with certain preventive measures than others. Therefore, by having a very large pool, you can see who is similar to whom. Therefore, who has the more chances of getting the right therapy at the right time. >> Reporter: And why 1 million people? We often hear about studies of a few hundred maybe even 1000 people. What will 1 million people give you that you could not get from 100,000? Speak 1 million will give us people with all sorts of diseases and disease progressions that are different from one another. It will give you healthy individuals as well. It will allow us to follow those individuals through at least 10 years. >> Reporter: Researchers have used the term decision medicine before. Is it still just a concept or has it already been in practice? >> It has been in practice in Doctor Cohen director of NIH has given an example that if you go to get your glasses, you get glasses that are right for you. We want to do this for everything. Especially to prevent diseases. Perhaps, the reference -- Prevention for you might be different for the prevention for me. If we have large numbers we could get to the answers and time. >> Reporter: How far out do you think we are from obtaining that goal of having the same kind of medicine for our diseases that we get when we go into the eye doctor and we get a prescription that is specifically for us? >> For certain cases or conditions such as cancer, we are not far out. For other ones, by not having enough people to study, we haven't discovered certain specialized personalized treatment yet. >> Reporter: How do people in San Diego become a part of the all of us project ? >> people can volunteer, go to the join all of us.org website provide their consent, read information, fill out questionnaires, and then they will be called to go to a center, donate a couple of tubes of blood, urine, and also get there measurements taken waist and hips and circumference. >> Reporter: What is the ongoing participation for this research subjects? >> Their electronic health records will be provided every quarter to the central research program. They will be treated in a very confidential matter. Trevis he will be preserved. Over time, by having this long-term collection, we can see if someone was healthy acquired a disease and how that person did in treatment. >> Reporter: And how their personal lifestyle and perhaps their personal genetic makeup may have contributed to that? >> Correct. Because people also be engaged through mobile app and there fit bits if they donate that data as well. >> Reporter: UC San Diego as a leader in that project? >> It is. We are Enrolling 20,000 people in the first year. We want to continue to do that five years from now. >> Reporter: I want to talk to you more about the privacy concerns that people may have when they get so much information in this particular project so much intimate information about themselves. How will that information be protected. >> Individuals Laba Number. To that number we will refer to the participant across the years. Their information will be kept confidential. It is a research program. So the certificates of confidentiality as well. No other individuals other than researchers will have access to those data. >> Reporter: The participants in this project that are participating health institutions, the National Institutes of Health, they are really sort of taking a risk taking on this mammoth project, aren't you? >> We did. We believe it is a very important one. It is the largest one ever. It may make other studies unnecessary. If we follow these people over time. Actually as being the lead of the California Consortium of precision medicine, we also take the risk together with the other University of California campuses as well as Cedar Sinai Medical Center in LA and University of health in California. We are a consortium of institutions all recruiting patients and engaging participants and truly believing that this will be a landmark study. >> Reporter: Hattie hope the outcomes of the study will change the average person's experience in the doctor's office? >> Many years from now, we will look back and we will say I cannot believe how we were all treated the same way once we were diagnosed with a particular disease. Let's say hypertension. And then the therapy was trial and error. Try this if it doesn't work we try that. In the future it will be, you have hypertension at this particular type. Therefore your treatment will start this way. >> Reporter: I have been speaking with Doctor -- profession and chair of the Department of biomedical informatics at the UC San Diego health. They get so much. >> Thank you.

An ambitious effort to speed up medical research by collecting health data from one million participants has just gotten underway. UC San Diego researchers are running part of the landmark research project called "All of Us."

"Many projects so far have involved either very few people or people from a very similar background. So, for example, white males are well represented in genetic research," Dr. Lucila Ohno-Machado said. She is co-leading a California consortium of universities, hospitals, clinics and research organizations participating in the National Institutes of Health-led project.

The goal of the project is to collect health data from a diverse group of Americans representing a wide cross-section of the population including different ethnic groups, ages, genders and socioeconomic statuses to volunteer information about their health, genetic profiles and lifestyles.

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Ohno-Machado, a professor and chair of the Department of Biomedical Informatics at UC San Diego, said the data will expand opportunities for truly personalized medicine to fight disease.

"Many years from now we'll look back and we'll say 'I can't believe we were all treated the same way' once we were diagnosed with a particular disease, let's say hypertension and the therapy was trial and error, 'try this and then try that'," Ohno-Machado said. "In the future, it will be, 'you have hypertension of this particular type, therefore your treatment will start this way.'"

Ohno-Machado joins Midday Edition to discuss the details of the project and how people in San Diego can participate.

All of Us Research Program