Patient Brigade aiding UI Cancer Center with new PCORI contract

Colorectal cancer took Candace Henley’s home, her car and her job. But it didn’t take her life.

A 15-year cancer survivor, Henley made a promise to God that if she overcame her battle with the disease she would help others navigate a healthcare system that at times she felt was overwhelming. As co-leader of the University of Illinois Cancer Center’s Patient Brigade, Henley is assisting the organization on a new Patient-Centered Outcomes Research Institute contract (PCORI, number 10629) that will develop learning tools to ensure that patient’s/survivor’s play an integral role in the Cancer Center’s strategic research development.

“Underserved communities in Chicago carry some of the greatest cancer burdens,” said Vida Henderson, PhD, PharmD, MPH, research scientist at the UI Cancer Center, who along with Karriem Watson, DHSc, MS, MPH, and Susan Hong, MD, MPH, are principal investigators on the project. “Having an active voice in all phases of research is a key factor to ensuring not only diversity and inclusiveness in clinical trials, but also in expanding the research of cutting edge cancer discoveries.

“Knowing this, there is a lack of best practices in training and patient stakeholder engagement.”

Comprised of about a dozen cancer survivors, family of, or supporters of survivors, the Patient Brigade was created to reflect the diverse ethnic, cultural and socioeconomic groups in the Chicago area. Guided by principles of community-based participatory research (CBPR) and PCOR, the Patient Brigade was the inspiration of Patient Advocate Stephanie Carter-Logan, a three-time cancer survivor who received her care at the UI Cancer Center.

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

During the two-year contract – the UI Cancer Center will receive nearly $250,000 in that time – UI Cancer Center researchers and Patient Brigade members will share information as to the areas of research the center should be focused on, how to best engage communities in the center’s research, and how to disseminate the information into the communities the UI Cancer Center serves. The information will be used to develop a training toolkit for communities, advocates and researchers as a resource for best practices in conducting community engaged research and working with community members to guide strategic planning of cancer centers.

“This project was selected for Engagement Award funding because it will build a community equipped to participate as partners in community engaged research and develop partnerships and infrastructure to disseminate PCORI-funded research results,” said Jean Slutsky, PCORI’s chief engagement and dissemination officer. “We look forward to working with the University of Illinois Cancer Center throughout the course of their two-year project.”

Colorectal cancer is the third most common cancer in men and women in the United States. Sometimes abnormal growths, called polyps, form in the colon or rectum. Over time, some polyps may turn into cancer. Screening tests can locate polyps so they can be removed before turning into cancer. The tests may also help find colorectal cancer at an early stage, when treatment often leads to a cure.

Henley first experienced symptoms of the disease in 2002. She was constipated for two weeks, and while attending a bridal shower she became ill and was rushed to a hospital emergency room. She was treated and released, and the doctors, she said, didn’t know the reason for her sickness.

Two weeks after her initial hospitalization, Henley, a bus driver for the Chicago Transit Authority, was readying to begin her shift when she fainted. Once again she was rushed to an emergency room, and because her heart was racing, doctors initially thought she was experiencing a heart attack. Her white blood count was elevated, so a blood transfusion was performed.

After visiting with her primary care physician, she was recommended to see her gynecologist. It was then that cancer cells were first discovered. Her ovaries were removed first, and then her uterus. Another blood transfusion was performed, and the doctor assured her that her health would improve. But it didn’t.

Three months later, Henley found herself back in the emergency room. With her blood count again lowered, another blood transfusion was performed. It was then that physicians discovered she was bleeding internally. Emergency surgery was performed, and 95 percent of her colon was removed. Ten short days later she was released from the hospital.

“I was just sent home to deal with life, no navigation services, no nothing,” Henley said. “I didn’t know what to do. They didn’t tell me what my life was going to be like without a colon.”

During her hospital stay Henley’s bills began to mount. Unable to work because of her health, the mother of five was devastated when told her life expectancy was three to five years, Social Security denied her disability claim, no city services were available, and her short-term disability pay was negligible. She lost everything. It was then she attempted suicide, because “I didn’t want my children to see me wither away.”

Henley was sent to a psychiatric ward, and during those five days her nurse encouraged her to live for her children because they needed to spend every moment they could with her. She “asked God for forgiveness, and it was then I knew what I was going to do. I was going to raise awareness of cancer and not have people go through what I did.”

Henley’s life had a new purpose, and she became involved in numerous cancer advocacy groups. She began learning everything there was to know about cancer, and at one conference she attended she heard UI Cancer Center Director Dr. Robert Winn speak. She told Winn her story, and he told her the Center was interested in forming a Patient Brigade. Henley knew immediately that she wanted to be involved.

The Patient Brigade is only one of Henley’s many endeavors. Two years ago she started The Blue Hat Foundation, a colorectal cancer organization devoted to educating, raising awareness and providing resources, such as free health screenings, to minorities and medically underserved communities.

“I’m a serial advocate,” Henley said. “I believe that everyone deserves to put up their best fight against cancer. No one deserves to die from a disease that is 90 percent preventable because of a lack of education or awareness. Our goal is to save the lives of minority and medically underserved communities.”

Assisting Watson, Henderson, Hong and Henley with the PCORI contract is Joanne Glenn, RN, MBA, and Liliana San Miguel, project coordinator.

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