The All of Us Research Program is almost 5 years old. Five years might feel like a long time. But we’re just getting started.
We hope participants will stay with us for the long run. Let’s talk about why and how donating data over a long period of time can lead to important research discoveries.
The Power of Long-Term Research
Researchers can use people’s data to understand how diseases develop. But a disease can be very different depending on how long someone has been sick. Researchers benefit from having data over a long period of time.
Long-term research lets researchers understand disease at different stages of life. Involving many people lets researchers see what may cause someone to get sick. This information may help researchers predict who may be affected by a disease. They may find out if a disease is tied to genetics, or if people from certain backgrounds or certain locations may be at higher risk of getting a disease.
One long-term study is the Framingham Heart Study. It began with 5,209 healthy people in 1948. Participants shared their health records and information about exercise routines and eating habits. Researchers kept track of how this data changed and who developed heart disease over time. From this data, researchers have learned about risk factors for heart disease and ways to reduce those risks.
This study is still going on today. There are now more than 14,000 people from three generations in the Framingham Heart Study. Many in the newer generations are descendants of the first group of participants. This family data has let researchers study how genetics affect someone’s risk for heart disease.
More Data + More Time + More Diversity = More Research
Like the researchers in the Framingham Heart Study, All of Us knows that sharing health information over a long period of time helps. Many types of data the program asks for can easily be shared for years or decades.
For example, you can share electronic health records (EHRs). EHRs are records your health care provider uses to keep track of your health. Your EHRs might cover the time you’ve been with All of Us, and even further. Some All of Us participants have shared EHR records from as far back as 1980. These records have given researchers access to more than 30 million procedures.
If you have a Fitbit, you can also share Fitbit data of your physical activity. Right now, researchers have 31 billion data points they can study. This data can go back as far as 14 years. It includes information on sleep patterns, heart rate, and exercise.
This data lets researchers look at stages of disease and health over time. They also can see how your data may be related to times of illness or health in your life. For example, researchers linked data from personal Fitbit devices and EHRs to find the link between step count and chronic illness. Researchers can learn even more when this information comes from many different people.
The Importance of 10-Plus Years
Researchers using All of Us data have made so many discoveries with the data they have. Imagine what they could learn with 10 years of data.
Having this data is a responsibility that All of Us takes very seriously. The program protects your privacy by making sure researchers can’t have information like your name and where you live. All of Us also makes sure that researchers follow a set of rules when they want to access data like information about your DNA.
Whether you are a participant for one month or 10 years, we value your commitment to All of Us. The data you share will help researchers make new discoveries that could improve people’s health. We’ve accomplished so much in under 5 years. And because of the power of long-term research, we’ll accomplish even more in the future.
