The National Institutes of Health (NIH) is a little more than a year into a massive project of collecting and analyzing people's blood and urine to accelerate research and improve health. Wednesday through Saturday, its "All of UsJourney Research Bus" will be in Cincinnati.
Since the program's inception in May 2018, more than 200,000 people have registered with more than 75% of participants belonging to communities that have been underrepresented in biomedical research.
In Cincinnati, NIH will show off its interactive mobile unit and encourage people to sign up to be a part of the study. Even though the NIH and its partners draw blood on-site in some cities, in Cincinnati it will encourage participants to visit partner sites for that.
Tour Manager Luis Astacio explains initially participants are set up with a username and password enabling them to provide electronic health records. "They are also asked to come down to one of our local sites to have a physical measurement taken and provide a little bit of blood and a little bit of urine. Now that's what they are using to create the diverse data set," he says.
The government agency is placing a special emphasis on diversity to help researchers who will have access to the data as they learn more about disease.
There are privacy concerns. Here are steps the NIH is taking:
- Requiring partner organizations to prove they can meet strict data security standards.
- Encrypting all participant data.
- Requiring researchers seeking access to the data to register, take the NIH's ethics training and agree to a code of conduct for responsible data use.
- NIH makes data available on a secure platform. The All of Us research portal tracks the activity of all researchers who use it.
- NIH enlists independent reviewers to test for security controls in place.
Cincinnati Schedule:
Wednesday-Thursday - 3CDC (Cincinnati Center City Development Corporation) 1203 Walnut St., Cincinnati, OH, 45202 10 a.m. - 4 p.m.
Friday - 231 Albert Sabin Way, Cincinnati, OH, 45267 10 a.m. - 4:30 p.m.
Saturday - Price Hill Recreation Center, 959 Hawthorne Ave., Cincinnati, OH, 45205 11 a.m. - 3 p.m.
Researchers are already analyzing the data.
In just one year, “@AllofUsResearch has managed to become one of the largest, most diverse research resources in history,” said @NIHDirector https://t.co/mMhXJOU7MH pic.twitter.com/fPZNyx3YXq
— NIH Record (@NIHRecord) June 14, 2019
Astacio says, "There's hope here that we're going to find solutions to problems that we've had for a very long time."
