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*Image, from 2018, courtesy of the National Institutes of Health. Photo by Bob Gore.
Please join us in bidding a fond farewell to NIH’s leader of the last 12 years. In December, Francis S. Collins, M.D., Ph.D., stepped down as director of NIH. Dr. Collins was NIH’s longest-serving presidentially appointed director.
Dr. Collins had a vision of a research program that could tailor treatments to each of us. This idea is also known as precision medicine. His vision for precision medicine made the All of Us Research Program a reality.
“It is such a promising opportunity to transform the way we approach medical challenges,” Dr. Collins said of the program in the early days of All of Us. Medicine that takes into account your health behaviors, your lifestyle, and your genetics would have the best chance of working for you, he said.
Dr. Collins’s vision of the All of Us program grew out of his leadership in the Human Genome Project. The project was a 13-year effort to decode the human genome. Our genome contains the blueprint that makes us who we are. The blueprint is in the form of a long sequence of DNA letters. These letters form genes that encode all the tools and materials that make up our bodies. The Human Genome Project finished its first genome sequence in 2003.
Since then, technology that reads our DNA has improved a lot. What took 13 years then for the first complete genome takes a week to do with 5,000 All of Us participants. This speed is one reason All of Us can build a huge database of information about diverse genes. Connecting the diverse makeup of All of Us to health information will show us the influence of genes on health. And for a much broader population than ever studied before.
“On a national scale, he cast a vision for what we could do with big scientific programs, first with the Human Genome Project, and now with All of Us. These tools are accelerating medical discovery, improving healthcare. And I can’t imagine going through the last two years of COVID-19 without him,” said All of Us CEO Joshua Denny, M.D.
“On a personal level, his discoveries have impacted members of my own family. His mentorship has changed my career path. And his example of living out his faith as a scientist has been an inspiration to me. We are all better off because of him,” said Dr. Denny.
Dr. Collins became the NIH director in 2009. In addition to All of Us, he launched NIH efforts to speed up research into brain diseases, cancer, and opioid addiction. He also led research during the COVID-19 pandemic. He ensured the development of safe and effective vaccines. He directed NIH to put resources toward the hardest hit communities. He also supported research that looked into why some people don’t fully recover from COVID.
“It has been an incredible privilege to lead this great agency,” Dr. Collins said. “I am proud of all we’ve accomplished. I’m most grateful and proud of the NIH staff and the scientific community. The Human Genome Project gave us the text of our blueprint, but there’s so much we still don’t understand. All of Us is really going to change that, and will do it in a way that’s truly inclusive.”
Dr. Collins isn’t leaving the NIH entirely. He is still working at the National Human Genome Research Institute as a researcher. In his laboratory, he studies type 2 diabetes. As an All of Us participant, he is still part of our program. And maybe, with the many research questions he has, he will explore diabetes using the All of Us Research Hub.
The directorship of the NIH requires Senate approval. Until a new director is nominated by the President and confirmed, Lawrence A. Tabak, D.D.S., Ph.D. will serve as acting director. Dr. Tabak worked with Dr. Collins as NIH’s Principal Deputy Director for more than a decade and is deeply knowledgeable and supportive of All of Us.
Watch this farewell tribute for Dr. Collins with dozens of prominent figures from around the world. See researchers, government officials, musicians, actors, and the Dalai Lama honor him.
More than 451,000 participants who have completed the consent process.
More than 315,000 participants fully enrolled.*
More than 1,300 researchers registered for the Workbench.
*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine or saliva samples.
When the pandemic began, All of Us paused all in-person enrollment and other live events. We are just starting to open up again in places where it is safe. If your area hasn’t started in-person enrollment yet, you can still sign up and participate online at JoinAllofUs.org.
All of Us recently welcomed Martin Mendoza, Ph.D., as its first Director of Health Equity. In this role, Dr. Mendoza will provide leadership to foster inclusion and equity across the program.
With this new position, Dr. Mendoza says that his career has come “full circle.” He had his first experience with cutting-edge science when he was a senior in high school. He earned the chance to intern at the NIH, where he worked on the Human Genome Project. This project led to the discovery of thousands of genes that make us who we are. Now, Dr. Mendoza joins All of Us, where we are using these genes (and so much more) to guide health and medical research.
All of Us hopes that research using our data will help make health care more personalized and equitable. Dr. Mendoza’s work will center on just that.
Achieving health equity is central to the mission of All of Us. But what is health equity, and why is it so important?
Dr. Mendoza describes health equity as the “attainment of the highest level of health for all.” He knows this will not be an easy goal to reach. Across the globe, some groups of people have poorer health than others. This is partly due to health inequity. Health inequity happens when human-made systems and policies give some groups an advantage over others. Some examples are:
Racism, which discriminates against individuals based on race or ethnicity
Health inequities, and many other factors, can make it harder for some people to find a health care provider or get the medicine they need.
Health inequity also plays a role in research. For decades, some communities have been left out of research studies. This could be because research centers were not in their communities. It could also be because they were not invited to participate in research. Others may not participate due to fear of medical discrimination or mistreatment. Because of this, we know less about the health of many groups, including racial and ethnic minorities. This can make it hard for some people to get the treatment that works best for them.
Making sure research studies include people of all backgrounds can change that. For example, we now know that people of African, Puerto Rican, and Mexican descent are less sensitive to a medicine used in inhalers. People with these backgrounds also have the highest rates of asthma in the United States. Knowing this is important for health care providers to better treat people who use inhalers.
Inequities like this are part of why we are building one of the most diverse health databases in history. With Dr. Mendoza’s expertise, All of Us will continue to prioritize health equity. This means including communities and researchers that have been left out in the past. This requires us doing the work together.
Dr. Mendoza is committed to getting everyone at All of Us involved. That includes our participants and the staff who recruit participants. It also includes the folks who decide what information we invite participants to share, and the researchers who use the data. The goal of reaching health equity is the common thread that ties together every part of All of Us.
Do you need glasses or contact lenses to see? If so, you’ve got plenty of company. According to NIH’s National Eye Institute (NEI), nearly two out of three American adults use glasses or contacts. Unfortunately, for some eye problems, glasses and contacts aren’t enough.
“Low vision” refers to vision problems that glasses and contacts can’t fix. About 12 million people over the age of 40 in the United States have vision impairment. People with low vision may struggle to do tasks that used to be easy for them, such as grocery shopping, driving, or reading. But you can take steps to prevent or manage low vision.
Next month is Low Vision Awareness Month. That means now is a great time to learn about low vision. Then in February, you can help spread the word about what causes low vision, how to prevent it, and ways to manage it.
What causes low vision?
Low vision affects older adults more often than younger adults. This is because most conditions that cause low vision happen as we get older. For example, age-related macular degeneration is a condition that is caused by long-term damage to the part of the eye that controls sharp vision. A condition called cataracts happens when the lens of the eye becomes cloudy over time.
Less common genetic disorders and serious eye injuries may also cause low vision. These can affect individuals of all ages.
Describing how people with low vision see the world can be challenging. NEI developed the “See What I See Virtual Reality Eye Disease Experience” to help. Check it out here.
How can you prevent low vision?
Visiting the eye doctor regularly is important to prevent low vision, especially as you get older. Special exams, called dilated eye exams, are the best way to catch eye diseases early on. If caught early, they can usually be treated before any major loss of vision.
How can you manage low vision?
Often, damage that causes low vision cannot be undone. However, eye drops, laser treatment, and surgery can help keep it from getting worse. Sometimes, these treatments can even restore vision. This is especially true for people with cataracts.
Vision rehabilitation can also help manage low vision. Vision rehabilitation specialists help people with low vision learn skills, find tools, and get necessary support.
Though managing low vision is possible, prevention is still the best treatment. So, in honor of Low Vision Awareness Month, consider asking about an eye exam at your next checkup with your health care provider or eye doctor!
Getting to One Million
All of Us picked a familiar face to fill its new chief cohort development officer. Holly Garriock, Ph.D., will lead recruitment and retention of participants nationwide. Called a cohort, this large group of people will reflect America’s rich diversity. All of Us plans to build a cohort of one million people. This includes groups who have been left out of research in the past. “I am excited to continue to work alongside my amazing colleagues,” said Garriock. Read more about Dr. Garriock and her new role.
Nutrition and Health Research
Leaders from 14 clinics and centers from across the country met on January 24 to kick off planning for a new study called Nutrition for Precision Health, powered by the All of Us Research Program (NPH). The study is an NIH-wide effort managed by the NIH Common Fund to help predict how individuals will respond to different foods and dietary patterns. NPH expects to begin inviting participants from All of Us to participate in the study beginning in 2023.
Voices of All of Us: From Driving a Bus to Driving Transformative Research
Retired nurse Joyce Ann Bell Winkler has led a busy life. She helped integrate her elementary school as a child. She drove a school bus full of students when she was 16. And she recently worked on the latest All of Us survey. This survey seeks to connect people’s daily lives with their overall health. As a participant ambassador, she raises awareness about the program from her small, rural home in Ridge Spring, South Carolina.
Cheryl R. Clark, M.D., Sc.D., was co-chair of an All of Us task force to design the latest survey. In this role, she made sure the survey asked about the social experiences of All of Us participants. These include isolation, discrimination, and other factors. The survey is called Social Determinants of Health. It is in portals now. More than 60,000 participants have taken it already.
“It’s been fascinating for me to understand how much of our biology is influenced by these social characteristics,” Dr. Clark said. Read about Dr. Clark’s story in a new Voices of All of Us feature.