A call to 'Connect' for cancer research

Researchers affiliated with an extensive, federally funded study have begun pursuing answers to the questions surrounding what causes cancer and how can it be prevented. But they aren’t doing it — in fact, they can’t do it — without the help of thousands of people across the nation.

The Connect for Cancer Prevention Study, or “Connect,” is led by a team at the largest cancer research group in the world, the National Cancer Institute, part of the National Institutes of Health. NCI is partnering with researchers at 9 health care organizations across the United States, including those at the Center for Health Research at Kaiser Permanente in the Northwest.

That’s where individuals — perhaps you — come in.

The health care organizations are recruiting a total of 200,000 adults 40 to 65 years old to participate in a monumental undertaking: They will share information throughout their lives so researchers can try to identify new and future patterns that may affect cancer risk and find ways to better prevent cancer.

After more than 2 years of preparation, Connect researchers are now recruiting participants, including Kaiser Permanente members in the Northwest.

Patient partners pave the way

Two Kaiser Permanente members in Oregon, Dana Ashmore and La’Verne Lynn Adams, have been involved in the study since 2020 as members of Connect’s Participant Advisory Board. They are among hundreds of patient partners in Kaiser Permanente’s Person & Family Centered Care program.

Adams and Ashmore and other patients contributed to the study in a number of important ways, including breaking down parts of the study in ways that nonscientists could understand.

“There is a movement in health care to recruit patients to partner with physicians, administrators, and others to provide the patient perspective,” Ashmore explained.

Although her career led her in other directions, including as a training specialist for the federal government for the final 15 years before her retirement, Ashmore was always interested in science. She said yes when invited to join the advisory board, as did Adams, who was already serving on Kaiser Permanente’s Patient Advisory Council for Mental Health and Black, Indigenous, Multiracial, and People of Color Council.

For Adams, a licensed professional counselor who is Black, serving on the advisory board afforded her the opportunity to bring in voices that might not be heard otherwise. “I want to make sure people of color are in the room and not on the outskirts,” she said. “For me, it’s bringing my voice, and information, back to my community.”

Family histories of cancer

Cancer has affected the families of both women. Adams’ mother and grandmother, as well as other family members, died of cancer, while Ashmore’s mother and father both had lung cancer.

“They both smoked heavily for many, many years,” Ashmore said. “My mom quit when she found out she had lung cancer in her late 60s. She lived 10-plus more years after surgery and died of a heart valve problem. Dad quit when he turned 65 and was diagnosed 3 or 4 years later. He lived about 6 more cancer-free years after surgery but still died of COPD (chronic obstructive pulmonary disease).”

Ashmore herself became addicted to cigarettes as a teenager. “I smoked for maybe 20 years and was bathed in secondhand smoke before that. I know I’m at high risk.”

A rare opportunity

According to the Centers for Disease Control and Prevention, cancer is currently the second-leading cause of death in the United States, and its causes, treatment, and prevention have been studied for more than 200 years. But studies such as Connect are needed because collecting information from people throughout their lives is important to understanding how cancer may develop.

Cancer researchers from around the world will be able to use the information gathered by Connect to learn more about the causes of cancer and how to better prevent it. People who join the study will be part of a community working toward a common goal of learning how to prevent cancer for future generations.

“I’ve always wanted to be a scientist, but this is what I can do,” said Ashmore. “I don’t have the education to do what they do, but I really love supporting the science. The possibilities of great breakthroughs: That’s what excites me.”

To join Connect, you must be 40 to 65 years old at enrollment with no personal history of cancer — other than non-melanoma skin cancer or a condition that raises cancer risk, such as DCIS, or stage 0 breast cancer. You must also get your health care from Kaiser Permanente of the Northwest or one of the other partner health care systems. You can find out more about who can join the study on the Connect website. Learn more about participation and how to join the study by visiting the Connect for Cancer Prevention Study page.