Building partnerships with patients is key

Susan Chang

For neuro-oncologist Susan Chang, the partnership she builds with her patients is more than a privilege. Prominently displayed on her desk is an overstuffed journal bound to the brim, filled with every piece of paper that a patient or their family has ever written to her.

"Sometimes after around 8 o'clock at night when I'm by myself, I take it out and go through it," says Chang. "It makes me speechless. You become a part of their lives in a way they really appreciate and they tell you, and that's very meaningful to me."

The support of her patients is as essential to Chang's performance as her compassion and commitment—Chang's responsibilities as Director of the Division of Neuro-Oncology and member of the HDFCCC's Neurologic Oncology program are no easy task. After a patient is diagnosed with a brain tumor and operated on, Chang meets them post-surgery in the hospital to guide them through the next steps of what is often a grueling and uphill battle.

"Sometimes you have to brace yourself and say, this is going to be a hard day. But we'll do it together. Whatever journey it takes us on, that's where we're going to go," explains Chang. "Whatever happens—I'm there with them along the way, I'm going to be there whenever they call, I'm going to be there to connect with during this scary time and provide resources. We're a team."

It's this same sense of teamwork that Chang credits with building UCSF's unparalleled and award-winning patient care. UCSF embraces a patient-centered program in which all physicians and ancillary personnel work together to make sure that the patient gets the best care possible, and Chang and her team are at the forefront leading by example.  In 2012 the Neuro-Oncology Service received the UCSF Medical Center Pinnacle Award, which recognizes the best patient satisfaction scores, for the fifth consecutive year.

"We obviously want to do better in terms of survival, but we also want to be there for the patients," says Chang. "My proudest achievement is that we are able to provide the kind of care that I think patients really appreciate."

Although for many years UCSF has successfully and appropriately focused care on the patient, Chang acknowledges that providing care for caregivers is equally important in a patient's progress. Among Chang's current projects is the development of a caregiver program designed to provide resources specific to the caregiver and ways for the caregiver to cope, as well as a voice that the caregiver can have in the care of the patient.

"This is not a disease of the patient alone, there are huge ramifications for what happens to a family," describes Chang. "If we don't recognize that the caregiver is stretched, and if the caregiver can't take care of the patient, then we're not taking care of the patient either."

Further enhancing patient care at UCSF is the unique offering of clinical trials, what Chang describes as a series of new and relatively untested treatments that could provide an advantage for patients who want to try something different and potentially more effective than the standard treatment. According to Chang, the ability of clinical trials to move the cancer field forward is one of the most important reasons why she and many cancer patients remain at UCSF.

"It's a tough journey, you lose a lot of patients," says Chang. "I couldn't accept in myself that this is where we are and this is where we'll always be—I keep doing what I do with this kind of patient population because I believe we can make it better. And that's what UCSF and its position as a leading medical research facility affords to me and to academic medicine."

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