All of Us: Empower 1M for Better Health
Why the All of Us Research Program is Changing Healthcare
All of Us is a groundbreaking research program from the National Institutes of Health (NIH) that aims to collect health data from one million or more Americans to accelerate medical breakthroughs and create personalized treatments for everyone.
Quick Overview – All of Us Research Program:
- Goal: Build one of the largest, most diverse health databases in history
- Participants: 840,000+ people enrolled, with 80% from underrepresented groups
- Data Types: Electronic health records, surveys, physical measurements, DNA samples
- Benefits: Free DNA results, $25 compensation, contribute to medical research
- Eligibility: Any adult living in the United States
- Cost: Free to join and participate
Right now, healthcare often follows a one-size-fits-all approach. But imagine treatments designed specifically for you – based on your genetics, environment, and lifestyle. That’s the future All of Us is building.
The program has already returned personalized health-related DNA results to over 100,000 participants and identified 7,000 new genetic variants that will improve genetic testing for everyone. With data from participants included in over 12,375 health studies, researchers are using this massive dataset to understand why some people get sick while others stay healthy.
I’m Maria Chatzou Dunford, CEO and Co-founder of Lifebit, where we’ve spent over 15 years building genomics and biomedical data platforms that power precision medicine research like All of Us. Through our work with public sector institutions and pharmaceutical organizations, we’ve seen how initiatives like All of Us are revolutionizing how we approach healthcare through secure, federated data analysis.
All of Us basics:
- Cancer Moonshot
- Defense Health Agency
What is the All of Us Research Program?
All of Us is one of the most ambitious health research projects our country has ever seen. This NIH initiative, born from the national Precision Medicine Initiative, is creating something truly special: a massive biomedical data resource that could change how we think about healthcare forever.
Think about it this way – for decades, medical treatments have been designed for the “average” person, who, in research, has often been a white male. But we’re not average, are we? We’re all wonderfully unique, with different genetics, lifestyles, and backgrounds. All of Us recognizes this and is working to make precision medicine—healthcare tailored to the individual—a reality for everyone.
The program brings together a nationwide community of participants who are willing to share their health information for the greater good. We’re talking about data from surveys, DNA samples, electronic health records, physical measurements, and even information from fitness trackers. It’s like creating a detailed map of human health – one that includes all of us, not just some of us.
What makes this effort truly historic is its scale and inclusivity. The goal is to gather health data from one million or more Americans, with a special focus on including communities that have been left out of medical research for too long. This isn’t just about collecting data – it’s about building trust and understanding health and disease in ways that will benefit everyone.
The Mission: Accelerating Health Research for Everyone
The heart of All of Us is beautifully simple: accelerate health research so we can create custom treatments and better disease prevention strategies for each person. Imagine walking into your doctor’s office and getting treatment recommendations based on your specific genetic makeup, your environment, and your lifestyle. That’s the future this program is building.
The program stands on three important core values: diversity, transparency, and security. Diversity means making sure all communities are represented – especially those who haven’t had a voice in medical research before. Transparency means being completely open about how your information is collected and used. And security means protecting your privacy every step of the way.
What I love most about this program is how it treats people as true participant partners, not just research subjects. You’re not giving your data and walking away – you’re joining a community working together toward better health for all. This partnership approach was even showcased when All of Us featured on Good Morning America, where a reporter joined the program to show how this massive health database helps both individual participants and the entire country.
Key Accomplishments and Findings
The results so far are pretty incredible. All of Us has already returned personalized health-related DNA results to over 100,000 participants. These aren’t just fun facts about your ancestry (though you get that too) – we’re talking about real health insights that can help you make better decisions about your care.
But here’s where it gets really exciting for research acceleration: the program has identified 7,000 new genetic variants. A genetic variant is a difference in a person’s DNA. By identifying thousands of previously unknown variants, especially in diverse populations, researchers can develop more accurate genetic tests and gain a deeper understanding of the genetic roots of disease. This is already improving genetic testing for everyone, leading to more accurate diagnoses and better treatments. When you participate in All of Us, you’re literally helping to expand the map of human genetic diversity.
The scale of what’s being accomplished is unprecedented. By creating one of the largest and most diverse biomedical data resources ever assembled, All of Us is giving researchers the tools they need to conduct thousands of studies on health and disease, including critical work on the long-term effects of COVID-19. This isn’t just changing medical science – it’s revolutionizing it.
The diversity of the data is what makes this program truly special. When medical research includes people from all backgrounds and communities, the findings benefit everyone. That’s the promise All of Us is delivering on, one participant at a time.
How to Join the All of Us Initiative
Getting involved with the All of Us Research Program is one of the most meaningful ways you can help shape the future of healthcare. The best part? It’s designed to be incredibly welcoming and accessible for everyone.
Who can join? Any adult living in the United States, regardless of health status. Whether you’re perfectly healthy, managing a chronic condition, or somewhere in between, your unique health story matters. The program specifically aims to reflect the rich diversity of our country, which means your participation helps ensure future medical breakthroughs work for people like you.
There’s no cost to join – in fact, quite the opposite. You’ll receive a $25 compensation for completing the initial steps, plus you can get valuable insights about your own health through free DNA results. Think of it as getting paid to potentially learn something fascinating about yourself while contributing to groundbreaking research.
Step-by-Step Guide to Participation
Joining All of Us is refreshingly straightforward. We’ve streamlined the process so you can focus on what matters – contributing to better health for everyone.
Getting started is as simple as creating an account online with just your email or phone number. No complicated forms or lengthy applications – just the basics to get you connected to this incredible community.
Next, you’ll review and sign consent forms that clearly explain how your information will be used and protected. We believe in complete transparency, so you’ll know exactly what you’re agreeing to. Your privacy and security are absolutely paramount, and these forms spell out all the safeguards in place.
The electronic health records step is where things get really valuable for researchers. By agreeing to share your EHRs, you’re providing a comprehensive picture of your health journey – everything from past diagnoses to current medications. This data helps researchers understand health patterns across different populations.
You’ll also complete health surveys that dive into your lifestyle and environment. These aren’t boring medical questionnaires – they’re designed to capture the full picture of what makes you, you. Your diet, exercise habits, living situation, and daily routines all provide crucial context that helps researchers understand the many factors influencing health.
Finally, you’ll visit a partner center to provide physical measurements and biosamples like blood, urine, or saliva. The staff at these locations are friendly and experienced, making the process quick and comfortable. This step provides the biological data that enables genomic analysis and personalized health insights.
You’re always in control. You can choose to leave the program at any time if your circumstances change.
Where and How to Sign Up
All of Us has made joining convenient through multiple options. The easiest path is through the online portal, which walks you through everything from your computer or phone. It’s user-friendly and designed so you can complete most steps from home.
If you prefer face-to-face interaction, there are hundreds of partner locations across the country. These sites are often located in healthcare organizations or community centers, creating a welcoming environment where staff can help you through the process and answer any questions.
The program also hosts community events where you can learn more, meet other participants, and even sign up on the spot. With partnerships across over 350 community organizations, there’s likely a convenient option near you.
Ready to become part of something bigger? Join the All of Us program today and help build a healthier future for everyone. Your participation truly makes a difference in advancing precision medicine for all.
What Happens to Your Data? Security and Research
When you decide to share your health information with All of Us, you’re probably wondering exactly what happens to it next. It’s a completely natural concern, and we want you to feel confident about how your data is protected and used.
Your information comes to us through several different channels. When you consent to participate, we gather your electronic health records from your healthcare providers – but only after removing identifying details like your name and address. You’ll also share insights through health surveys about everything from your daily habits to your family history. During your visit to a partner center, we collect physical measurements like your height, weight, and blood pressure. We also analyze biosamples – blood, urine, or saliva – to understand your genetic makeup.
Looking ahead, we’re exploring ways for participants to share data from wearable devices like fitness trackers. This could give researchers fascinating insights into how daily activities and sleep patterns relate to overall health.
The security of your data isn’t just important to us – it’s absolutely essential. Everything is stored on a secure, cloud-based platform called the Researcher Workbench. Before any researcher can access your information, we strip away all personal identifiers. Your name, address, phone number, and other details that could identify you are completely removed. We follow strict federal laws like HIPAA, and the program has a Certificate of Confidentiality from the U.S. government. This provides an extra layer of legal protection by preventing your data from being used in most legal proceedings. Our security systems are constantly monitored and tested to prevent unauthorized access. Think of it like a digital vault with multiple layers of protection. Your privacy and security are our top priorities, and we take that responsibility seriously.
How Researchers Use Your Information
Once your data is safely stored and de-identified, it becomes part of something truly remarkable. Researchers across the country can access this information through the secure Researcher Workbench to tackle some of healthcare’s biggest challenges.
Scientists are using All of Us data to uncover health patterns that were never visible before. With information from hundreds of thousands of diverse participants, they can spot connections between genetics, lifestyle, and health outcomes that smaller studies simply couldn’t detect. For example, researchers are analyzing the data to identify risk factors for long COVID, explore links between neighborhood environments and mental health, and understand disparities in chronic diseases.
The program is helping researchers understand disease risk factors in entirely new ways. Why do some people develop diabetes while others don’t, even with similar lifestyles? How do environmental factors interact with our genes to influence cancer risk? These are the kinds of questions that All of Us data helps answer.
Perhaps most exciting is how researchers are using the data to evaluate treatment effectiveness across different populations. This is the heart of precision medicine – figuring out which treatments work best for which people based on their unique characteristics. A key area is pharmacogenomics, the study of how genes affect response to medications. Findings from All of Us could one day help doctors prescribe the right drug at the right dose from the start, avoiding harmful side effects.
Your contribution is already making a real impact. Data from All of Us participants is included in over 12,375 health studies happening right now. Every survey you complete and every biosample you provide helps fuel findies that could lead to better treatments for conditions ranging from heart disease to rare genetic disorders.
All researchers who access the data must complete special training and agree to strict rules about how they can use the information. We make sure your data is used responsibly and ethically. You can even explore some of the aggregate genomic findings yourself in the Explore Genomic Data in the Data Browser.
Your Role as a Partner in the All of Us Program
Here’s what makes All of Us special – you’re not just giving data and walking away. You’re a true partner in this research, and that means you get valuable information back.
We’ve already returned personalized health-related DNA results to more than 100,000 participants. You can choose to receive reports on your genetic ancestry and traits. More importantly, you can opt-in to receive health-related results. These include reports on your genetic risk for several serious health conditions where early detection can be critical, and information on how your body might process certain medications.
Getting your results back isn’t just interesting – it can actually help you make better health decisions. If a result shows an increased risk for a condition, you and your doctor can discuss proactive steps like increased screening. The program provides access to genetic counselors at no cost to help you understand these results. Some participants have used their genetic information to have more informed conversations with their doctors about screening schedules or treatment options.
Your partnership with All of Us continues over time too. We may invite you to complete additional surveys as new research questions emerge. If you choose to connect wearable devices in the future, you’ll be contributing continuous data that gives researchers an even richer picture of how daily life affects health.
Every time you engage with the program, you’re helping build something unprecedented – one of the largest and most diverse health databases in history. Your ongoing participation, combined with that of hundreds of thousands of other Americans, creates a powerful resource for medical findies.
This isn’t just about today’s research. The data you contribute will help scientists make breakthrough findies for decades to come. You’re literally helping shape the future of healthcare for your children and grandchildren. Learn more about the continuous impact of the All of Us Research Program.
Frequently Asked Questions about the Program
We get a lot of great questions about All of Us, and we love answering them! Here are the ones that come up most often when people are deciding whether to join this incredible research journey:
Who is eligible to join the All of Us Research Program?
Here’s the wonderful thing about All of Us – if you’re an adult living in the United States, you can join. It really is that simple! Your age, health status, background, or where you live in the country doesn’t matter. Whether you’re 18 or 88, dealing with health challenges or feeling fantastic, your unique story matters to our research.
We’re especially committed to including people from all walks of life because, frankly, medical research has often left out entire communities. That’s why diversity is one of our core values. When we say we want to reflect the rich mix of America, we mean it. Your participation helps ensure that future medical breakthroughs work for everyone, not just a select few.
The beauty of this approach is that it makes our findings more meaningful and applicable to real people living real lives across the country.
What will I receive for participating?
While your biggest reward is knowing you’re helping shape the future of healthcare, we also give back to you directly.
First, you’ll receive personalized DNA results that can tell you fascinating things about yourself. This includes information about your genetic ancestry – essentially a window into where your family came from – and certain health-related genetic findings that might be important for you and your doctor to know about.
We also provide $25 compensation when you complete the initial steps, including sharing your electronic health records and visiting one of our partner locations for measurements and biosamples. Think of it as our way of saying thank you for your valuable time.
But honestly, many participants tell us the most rewarding part is being part of something bigger than themselves – contributing to research that could help their children, grandchildren, and communities for generations to come.
Is my personal information safe?
Absolutely, and I’m glad you asked because this is probably the most important question of all. Your privacy and security are not just priorities for us – they’re non-negotiable.
Here’s how we protect you: before any researcher ever sees your data, we remove all the personal identifiers that could link information back to you. Your name, address, phone number – all of that gets stripped away through a process called de-identification.
We use cutting-edge security technology that’s constantly tested and updated. Think of it like having multiple locks on your front door, plus a security system, plus a guard. Researchers can only access this de-identified data in our secure, controlled environment after extensive training and agreeing to strict rules about how they can use it.
We follow all federal laws and regulations for protecting health information, and our security measures are regularly audited. Your trust means everything to us, and we work every day to earn and keep it.
The bottom line? We’ve designed every aspect of All of Us with your privacy in mind, because we know that without your trust, this incredible research wouldn’t be possible.
Will my information be shared with my insurance company or employer?
No. Your information will not be shared with your insurance company or employer. Federal laws like the Genetic Information Nondiscrimination Act (GINA) make it illegal for them to discriminate against you based on your genetic data. The program also has a Certificate of Confidentiality that adds another layer of legal protection. Our commitment is to you and to research, and that requires keeping your data separate from commercial or employment interests.
Can I leave the program at any time?
Yes, participation is voluntary, and you can withdraw at any time. If you decide to leave, you can choose what happens to your data. You can allow researchers to continue using the data we already have, or you can request that we stop using your data for new studies and destroy your stored samples. You are always in control of your participation.
Conclusion: Shape the Future of Health
When you join the All of Us Research Program, you’re not just sharing data – you’re becoming part of something truly transformative. Think about it: your unique health story, combined with those of a million others, is helping to build the future of personalized medicine. That’s pretty incredible when you really consider the impact.
We’ve already seen remarkable results from this collective effort. Over 100,000 people have received their personalized DNA results, gaining valuable insights about their ancestry and health. Researchers have identified 7,000 new genetic variants that will improve genetic testing for everyone. Your participation directly contributes to these breakthroughs and helps tackle one of healthcare’s biggest challenges: making sure treatments work for all people, not just some.
The ripple effects of your contribution extend far beyond today’s research. Every survey you complete, every biosample you provide, and every piece of health data you share helps researchers understand why some people stay healthy while others develop diseases. This knowledge becomes the foundation for creating targeted treatments and prevention strategies that simply don’t exist yet. It’s how we work towards true health equity – ensuring everyone has access to healthcare that’s designed with their unique needs in mind.
At Lifebit, we’re honored to support initiatives that make large-scale biomedical data accessible and secure. Our federated AI platform enables the kind of secure, real-time data analysis that powers programs like All of Us. Through our Trusted Research Environments and advanced analytics capabilities, we help ensure that valuable health data can be used safely for research while protecting participant privacy. This is exactly the kind of technology that amplifies the impact of your participation.
Your decision to join All of Us creates lasting change that will benefit your children, your community, and generations you’ll never meet. Every breakthrough in precision medicine, every new treatment finded, and every life saved through better prevention starts with people like you who chose to be part of the solution.
Ready to shape the future of health? Your contribution matters more than you might realize. Learn how Lifebit supports federal health initiatives and find how we’re working to open up the power of health data for global good. Be part of something bigger than yourself – be part of All of Us.