When it comes to support, people with cancer have different needs than those with other diseases. Treatment plans can be complex; patients experience physical, emotional, and existential pain; and ongoing monitoring and follow-up care often continues after treatment. To help address the unique issues that patients with cancer face, NYU Langone Health’s Perlmutter Cancer Center has established a Patient and Family Advisory Council.

The Patient and Family Advisory Council currently has 12 members including people with a variety of cancers and caregivers. Some council members participate in support groups outside of Perlmutter Cancer Center, but the council enables them to interact directly with people who have experienced what they have gone through and also provide personal feedback directly to cancer center leaders, said Christy Manso, project manager for strategic initiatives and operations at Perlmutter Cancer Center.

“Some members of Perlmutter Cancer Center’s Patient and Family Advisory Council are still in treatment and others are in remission,” said Manso. “Being able to pay it forward to others who are going through what they might have gone through is very important to them.”

One of the first projects that the council is tackling focuses on patient-centered communications at the cancer center, specifically how providers and staff deliver education to patients around their diagnosis and treatment as well as resources available to them such as wellness, nutrition, community programs, and other support services.

“We will look at the language that is used to communicate to patients, and also some of the avenues that we use to get the information in their hands,” Manso said.

In addition to patient communication and education, other initial project ideas include reviewing resources to support coordination of care as well as evaluating wayfinding in clinical spaces. Manso notes that the advisory council is a vital resource for Perlmutter Cancer Center’s physicians and administrators, who are looking for patients’ perspectives around projects and help aid in future decision-making. In addition, the council will respond to suggestions from patients about issues that they face.

“The Patient and Family Advisory Council’s goal is to improve the quality and safety of patient care at the cancer center,” Manso said. “Hearing advisors’ perspectives on new initiatives and programs as well as existing policies and practices is incredibly important. Their voices are invaluable to us.”