Longtime Volunteers Believe Big Data Will Bring Better Health to All

Seattle participants Lin and Kean Engie joined the All of Us Research Program to help build a large dataset to support medical breakthroughs

Volunteering is the thread that unites Lin and Kean Engie with each other and the communities they call home. Through the All of Us Research Program, the couple has found a way to give and receive.

January marks National Blood Donor Month, and for the Engies, this month has offered another reason to donate. Since retiring and moving to Seattle five years ago, the couple has regularly donated blood to Bloodworks Northwest, an All of Us partner and independent nonprofit that supplies blood to more than 90 hospitals in western Washington State and Oregon. Last year, after learning about the All of Us Research Program, the couple decided to join.

Using Big Data to Improve Individual Health

“I agree with the mission of the program that it’s important to collect large amounts of data from a wide population to know the general health of the nation,” said Lin. “I’m also interested to know how my health is compared to other people in the country. For example, I’m 70—how do I compare with other people my age in terms of illnesses? Maybe there will be some research on this if the data is available.”

The couple joined the program online at JoinAllofUs.org and provided blood and physical measurements through the program’s partnership with Bloodworks Northwest. They also linked their electronic health records and their Fitbit data with the program to share additional information.

The potential for future research intrigued the couple and inspired them to learn more about All of Us. “We are curious people,” Lin said.

Lin and Kean first met in Kuala Lumpur, the capital city of their homeland, Malaysia. Although they are from opposite ends of their country, both grew up in low-income families and learned to provide for themselves early on. Kean paid for his higher education by attending college part-time at night at the University of New South Wales in Australia and working by day at Qantas airlines. He had always been interested in math and engineering, and the university’s aeronautical engineering had a program with Qantas. It took him five years to complete his undergraduate degree, but he was able to graduate with a job and without debt.

Lin left home at age 13 and attended a girl’s boarding school in the capital city run by the Methodist church. It was through the church that she began her volunteer work as a teenager and young adult. The two met in their 20s while volunteering at the church's counseling hotline called Befrienders. For several hours at night after their day jobs, they answered calls from distraught strangers, offering to listen and be a friend. They were trained by church counselors and provided mental health resources to callers.

“I’ve always wanted to learn new things,” Lin said. “The church provided training on how to listen and deal with difficult situations. I thought it was a very practical and helpful life tool.”

The experience helped develop a strong sense of compassion and a commitment to their community.

“What I learned is how to listen carefully to the other person on the line and to listen with empathy,” Kean said. “That is the key.”

Kean and Lin looked forward to connecting with each other after their volunteer shifts. They would enjoy dinner together at one of the traditional “hawker” stalls in outdoor open-air markets. “It was just nice to relax together and share a simple meal,” Lin said.

Ultimately, the two married, and then immigrated together to the United States when Kean got the opportunity to apply his engineering skills abroad.

The couple arrived in Cincinnati, Ohio on January 6, 1980, during the height of an ice storm. Kean’s first job was with General Electric in Ohio, followed by several other aircraft manufacturing companies in California, where the couple raised their four children. Lin worked as a technical writer and project manager at several computer and communication companies.

Now in retirement, the couple has found more creative ways to contribute to their community. In Pensacola, Florida, where they lived for several years right after retiring, they volunteered for the American Red Cross and Yes We Can Pensacola, a local organization helping to harvest fruits for elderly homeowners who were unable to pick the fruits because of the size and height of the trees on their property. Lin and Kean helped collect hundreds of pounds of fruit, mainly grapefruits each season, and passed them along to food banks.

The couple also volunteered with a local branch of the United Service Organizations, a national nonprofit providing entertainment and social programs for United States Armed Forces members and their families. Lin cooked meals at the facility while Kean greeted arriving members with his warm, welcoming smile. Both avid hikers, the couple also volunteered with the Florida Trails Association, organizing hikes and maintaining public trails.

Five years ago, the couple moved back to the West Coast to be closer to their children and two grandchildren. Now they volunteer every week with North Helpline, a local food bank, picking up food for distribution. Kean also volunteers with the Sierra Club, writing letters to supporters, and with Puget Soundkeeper Alliance, collecting trash from Lake Union in kayaks.

“That’s what we have in common,” Lin said. “We enjoy volunteering together. We focus on doing good and doing whatever is positive for our community, ourselves, and our families.”

For more than 50 years, the two have been volunteers and blood donors. “It is a precious gift,” Kean added.

As All of Us volunteers, the couple has the opportunity to get something in return. Both consented to have their genetic results returned to them, and they are now eagerly awaiting information about their genetic ancestry, traits, and health—key benefits for program participants. While they are looking forward to learning more about themselves and their own health, they are convinced that the program also will enable researchers to make discoveries to help improve health for all.

“Big data offers a path to improve health, to tailor individual prevention, diagnosis, and treatment plans,” Kean said. “Society needs to look at what is good for the overall community and how that translates into helping individual health.”