All of Us: How You Can Help Speed Up Medical Research

In 1997, my father received a horrifying diagnosis. A competitive 61-year-old triathlete, he was the picture of health. Except for the golf-ball sized tumor growing rapidly in his brain.

The morning after the diagnosis, the tumor was removed, but it was already too late. Despite surgery, radiation and chemotherapy, it spread and eventually claimed his life. At the time of diagnosis with a glioblastoma, we were told he was likely to live about nine months. He lived 14. The current life expectancy is 15 to 16 months. The needle hasn’t moved much.

For 20 years I’ve supported fundraising efforts for cancer research, hoping to contribute to a cure. Although progress has been made for many other cancers, glioblastoma still seems to be an unbeatable foe.

So, when I heard about the All of Us Research Program, I was intrigued.

All of Us is sponsored by the National Institutes of Health. Their goal is to accelerate health research and medical breakthroughs. They’re working toward this goal by building a database of environmental, lifestyle and health data from one million people.

This database will help researchers understand how diseases work and how they work in different groups of people.

If you have cancer, for example, it isn’t exactly the same for every person. Your genes and environment play a role in your health, your symptoms and what treatment may work for you.

So, rather than treat each patient solely based on their disease, this approach allows doctors to tailor treatment to take other factors into consideration.

I think it’s the future of medicine. So, I joined right up.

All I had to do was fill out a questionnaire and give blood and urine samples. In the future, All of Us may ask for more information, or for access to my electronic health record. It’s completely confidential. All information is stored on protected computers. Access to the information is limited. And my name and birthday have been replaced with a code so no one can identify me through my All of Us record.

I work at HAP and I was able to register online and provide my samples at work. But you don’t have to work in health care to participate. You can start by registering online. And there are eight locations where you can provide any samples needed and enroll in the program.

Henry Ford Health System is one of several prestigious health care organizations across the country that supports the All of Us Research Program. To help All of Us reach people who might not hear about the program or be able to get to one of the locations, they’ve taken the program on the road with the Henry All of Us Mobile Unit. “Henry” is a fully equipped 39-foot bus where Henry Ford staff can recruit, enroll and collect samples out in the community. You can request a visit by emailing AllofUs@hfhs.org or calling (844) 893-3908 (Option 1).

My dad would be 82 now. He would have seen his six grandchildren grow up. He would probably still be running. He’d certainly still be the guiding force behind the youth sports organization that was his passion. My mom wouldn’t have had to watch the love of her life waste away, wouldn’t have had to figure out how to go on without the man who was the magnetic center of her life and our family. You know. You’ve probably lost somebody too.

Together, one million of us might fuel research that will find preventive measures and cures for loved ones, friends, neighbors and total strangers whose families don’t want to watch them suffer from disease either. I hope you’ll join All of Us.

Take a tour of Henry, the "All of Us" mobile unit

Categories: Get Involved

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