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New Advisory Council Brings Patient Voice to Decision Making

Jason Merrill

Sept. 15, 2010 – Many times a hospitalization or outpatient visit leaves patients and families wondering how much better their experience would have been if only they had a voice in how things were done.

That’s why Siteman Cancer Center's main campus at Barnes-Jewish Hospital in St. Louis created a 29-member patient and family advisory council (PFAC) to make sure the voice of the patient becomes more involved in processes – from clinical to physical.

“We want the voice of the patient in decisions we make,” says JoAnn O’Neill, service and quality specialist at Siteman. “We will be working to change the culture to more patient-centered care to better meet the needs of our cancer patients and caregivers. The council is a partnership between patients, caregivers and staff.”

The Siteman PFAC is made up of 10 patients, seven caregivers and 12 Barnes-Jewish and Washington University employees. The patient and family members represent a variety of diagnoses and backgrounds to mirror the population Siteman serves.

“Ideally, the PFAC will be a tool for staff as we start new projects and evaluate old ones,” O’Neill says.

For example Barb Scott, a caregiver member of the PFAC, frequently visited Siteman while her parents battled cancer. She says her motiviation for being part of the program is to take “something that’s good and make it better.”

“Siteman is wonderful, but there are always things to improve,” Scott says. “We have a diverse group who all have seen many aspects of the center, and they have so many good ideas.”

Qualities of PFAC members include good listening skills, ability to see beyond their own experience, respect for the perspective of others and a willingness to share their stories in a meaningful way that can facilitate change.

“I have been impressed by the incredible dedication and commitment of the patient and caregiver members,” says Julie Margenthaler, MD, Siteman surgeon and PFAC member. “Their mission to improve our patients’ cancer journey is a constant reminder of where our focus and efforts must be directed. They provide the ultimate example for me as a physician striving to provide the best patient-oriented care possible.”

Members of the PFAC serve two-year terms. There currently is a currently a waiting list for future membership. For more information, contact JoAnn O’Neill at 314-454-8392.

Siteman's satellite facility at Barnes-Jewish St. Peters Hospital in St. Charles County was the first Siteman location to implement a Patient and Family Advisory Council. That PFAC was established in 2008.