Evelyn O—Seeing the Possibly of Advancements in Care Through "All of Us"

Sixty-one years ago, Evelyn O. was born in NewYork-Presbyterian Hospital three months premature, weighing just over 3 pounds. She spent the first three months of her life in an incubator as doctors tried to figure out why she didn’t move or cry.

It was the beginning of a lifelong relationship with Columbia and NYP that continues to this day. Evelyn was eventually diagnosed with a mild form of cerebral palsy. She has lived a full, independent life—earning a college degree and establishing a career with the NY Housing Authority, from which she recently retired. But she faced tremendous health-related challenges, including 12 surgeries on her legs and ankles and decades of physical therapy. “To me it wasn’t hardship—it was progress,” Evelyn says. “I always thought of it as an advancement. They know there’s a problem, and we’re going to fix it.”

As a child, several times a week she would travel to Washington Heights from Throgs Neck, where she and her two sisters were raised by a single mom. As a 5-year-old, she spent a year in the hospital, undergoing the first three surgeries that would enable her to walk.

It was during this extended stay that she also learned English. The adults in her life had migrated from Puerto Rico and only knew the basics of the language. From then on, Evelyn would serve as translator for her family as well as for her doctors and their Spanish-speaking patients. She would continue doing so as an adult, during a brief stint as a ward clerk in the NYP emergency department and into her career with the Housing Authority.

On a recent visit to NYP, Evelyn came across a table where doctors were enrolling volunteers in "All of Us." She was intrigued and decided to sign up. “I believe in giving back,” she says. “I got the best care that money could not buy. I cannot complain. That’s why anything I can do to give back, I’m there.”

 

But while filling out the survey of her clinical history, she identified a major problem. “This isn’t going to work,” Evelyn told the recruiters. “We’re in a Hispanic community. Why aren’t any of the materials bilingual?” She was floored.

She made her case to the doctors and a few days later got a call from the program’s New York City Consortium, inviting her to join its Participant Advisory Committee. The committee provides the program’s administrators with feedback that helps them correct problems as the program progresses. With a lifetime of experience in hospitals, and as a Spanish speaker from a Hispanic community, Evelyn brings unique experience to the program. She knows how to reach a medically underserved population that generally shies away from interaction with authorities.

“There are some elderly people, for instance, who have been here forever but don’t know how to read or write at all,” Evelyn says. “They would never tell you that. So, if this program is really going to be ‘all of us,’ you have to gear these things so everybody can fit in and no one feels bad for the level they’re at.”

Based on her input, the "All of Us" New York consortium now offers Spanish language materials for those interested in participating, an important step in reaching NYC’s 2 million Spanish speakers, without whom a truly representative sample of this city, and nation, is impossible.