R.I. helping to build one of the largest health databases
The Rhode Island Blood Center announced last month that it would participate in All of Us, a historical research effort to help build one of the largest, most diverse health databases in the United States. Led by the National Institutes of Health, the program aims to gather a broad range of health data from at least 1 million individuals.
Dr. Bruce Sachais, the chief medical officer at the Rhode Island Blood Center, said the program is making “remarkable strides” in advancing biomedical research so it’s “more representative and inclusive.”
Q. What is the All of Us program, and how does it work?
Sachais: The All of Us program is a national study funded by NIH that’s meant to collect information on a broad group of people over time to understand things that contribute to their health. The overall goal is to find new ways to keep people healthy.
Q. What kind of data is this program collecting from patients? A. Information from your health record, about your lifestyle and where you live, and about who you are as a person. We’re also looking at genetic information to try to correlate or use all of that information together to understand what makes people healthy and what might be able to predict disease down the road.
Q. Do patients have to provide blood samples? And do you have to be a current blood donor?
A. This is totally voluntary, and you do not need to be a blood donor. Here’s how it works: You go to joinallofus.org to sign up and take a survey. Then you would come into the Blood Center and we would do a very basic physical — measuring your height, weight, blood pressure, and pulse. Then we’d take a blood sample.
Q. Is this a “one and done” situation for participants? Or do they have to return to the blood center?
A. The study hopes to have participants provide information over 10 years. Some participants may be invited on a voluntary basis to return periodically to give additional samples. But after the first visit, most of the participation can be done by phone or other means [such as answering questions online].
Q. What are researchers planning to use this data to learn about?
A. One of the strengths of this study is that there’s no specific hypothesis or specific thing that’s being studied. It’s open to a wide variety of researchers that can register to have access to the data [but no one’s personal information, such as their name or other identifiers, are attached to that released data] so that they can then go and ask the data all sorts of questions about lifestyle, environment, genetics, lab tests, etc. Then they can use that information to predict how the population’s health will progress over time.
Q. What could participants get out of this study?
A. Mostly, they’ll walk away knowing they contributed to the knowledge of how to keep people healthy. But there is a possibility, if you choose, to get your genetic information back to you. All of the information is confidential and only shared with the participant. Then we will have a genetic counselor that would be able to answer any questions.
Q. What do you mean by “genetic information?”
A. It’s broad genetic information that’s being collected. Then you can learn about your ancestry and genes that you may have that could put you at risk of disease. But it does not take the place of a specific test your doctor might order for you if you have a health concern.
Q. How many people have enrolled in the U.S. so far? How many people have enrolled in Rhode Island so far?
A. More than 763,000 people have enrolled in the All of Us Research Program. [As of mid-March, the Rhode Island Blood Center enrolled 25 participants, and is expecting to enroll five to 10 patients per week going forward.]