The Future of Medicine is All of Us
Lyndsey is a survivor. At 16 years of age, Lyndsey was diagnosed with ovarian cancer. Surgeons removed a 10-pound tumor.
“The cancer diagnosis radically changed my life.”
Lyndsey, now 44, is an LGBTQ advocate especially for young people. “I had always been healthy. I had never had any really serious sickness until I was diagnosed with cancer.
“After that, I became hypervigilant about others' care and health and I talked to people about needing awareness about their familial health history. I wanted everyone to know about any risks they might have.”
Lyndsey’s cancer diagnosis and recovery are motivating factors for becoming a health and wellness advocate.
“I want future generations not to go through the things that I went through. For people to have access, information and resources to make the right medical decisions. That is why I joined the All of Us Research Program.”
Revolutionary Research
The All of Us Research Program is a National Institutes of Health effort to build the most diverse health database in the United States aimed at enrolling one million or more people nationally. Medical researchers will use the data gathered to learn how biology, lifestyle and environmental factors affect health, which may one day lead to new ways to treat and prevent disease.
“If you and I were to go to the doctor and we are both diagnosed with high blood pressure or high cholesterol, odds are that we would walk out of the appointment with the same prescription,” said Steven E. Reis, M.D., principal investigator for All of Us Pennsylvania and associate senior vice chancellor for clinical and translational research, health sciences, and distinguished service professor of medicine at the University of Pittsburgh
-- and the very first person to enroll in the All of Us program. “That prescription may work for you, but it might not work for me because we have different genetic makeup and different lifestyles.
“The All of Us Research Program will change that standardized treatment,” Reis said. “The program will revolutionize how diseases are prevented, diagnosed and treated based on individual differences. In other words, the more we know; the more personalized we can make medical treatment.”
Adults 18 years of age or older are eligible to join the of All of Us Research Program. There is no cost to join. Participation includes answering online surveys as well as sharing electronic health records. Participants also may also give samples of blood, urine and/or saliva for lab and DNA tests. The health information that participants share with be kept in a secure database. Researchers all over the world will be able to apply to use de-identified data to study many different health conditions with the goal of advancing our knowledge and improving care.
Building Trust
Denise believes that participation in the study is about relationships and trust. She has worked to enroll individuals and has shared her own experience. “I try to tell my personal story. My mother has diabetes and high blood pressure. My son has high blood pressure and I have two kids with sickle cell. I want the best medicine available, but no treatment works the same for every person.”
More than 80 percent of participants who have completed all the initial enrollment steps are Black, Latino, rural, or from other communities that have been underrepresented historically in biomedical research.
Diversity and Inclusion
Diversity is one of the core values of the program. All of Us is looking for participants from different races, ethnicities, and age groups as well as a diversity of gender identity, sexual orientation, socioeconomic status, education, disability and health status. People from all regions of the country are encouraged to join the program.
"In order to practice precision medicine, or personalized medicine, we need data that truly reflects the full diversity of our country," said Mylynda Massart, MD, PhD, assistant professor of family medicine and co-investigator for All of Us Pennsylvania.”
Massart said her practice serves a primarily African American population, and she is keenly aware of the importance of complete data.
"When I practice, I want to use evidence-based medicine, but historically, a lot of research has not included African ancestry," she said. "Therefore, I don't actually have evidence that's relevant to the patient that I'm caring for."
Helping Future Generations
There are a variety of reasons why people participate in the All of Us program.
For Carol, who has been with the program from the beginning, passing along information to future generations is a driving factor for her decision to join. “I have children. I have a grandchild and we do see diseases [that] run in our family,” she said. “I always think that if you got your mother’s brown eyes, you probably got everything else. A lot of heart disease [in our family]. We have cancer. We have arthritis. I would like to know if that is genetic or if that is injury related. A couple of us have asthma and I would like to know if that is environmental or inherited and I would like to pass that information down to my grandkids.”
Leesa, 65, is a physical therapist who suffered with an undiagnosed illness for a year and a half before anyone could help. She lost hope and became suicidal. Her experience made her an advocate of this research, “so that the next person does not have to go through what I went through.”
She sees the benefits of a one-million-person strong database. “This is not a guessing game,” said Leesa. “This is not an N of two. This is a large-scale study. This is something that will help us really be able to understand the future of medicine, the future of health care.
“I think that it is critically important because of the precision involved and the numbers. You know it is one thing to have a small study. You can still make good prediction with a small study, but with large studies you can make very precise predictions about what is going to happen. I think about what we have been through in the past year and a half. If we had done something like this 20 or 30 years ago, would we know what we know now and could we have prevented this?”
Libby was born with spina bifida, a birth defect. She was adopted and does not have access to her genetic history. Joining All of Us can offer some genetic information. “As an individual with a disability, I bring a unique perspective that is often left out of research. As an Asian American woman who is a part of multi-minority groups in America, I have a voice that is often unheard or not as strongly heard as others.”
The All of Us Research Program gives participants the opportunity to become a partner in shaping the future of health research.
If you would like to learn more, go to https://allofus.nih.gov.
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