Patients are the most underutilized resource in health care. We are surrounded by patients and need to take advantage of this incredibly valuable population.— Deanna Attai, MD
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Breast surgeon Deanna Attai, MD, is a virtual mighty mouse as a spokesperson for her professional organization, the American Society of Breast Surgeons (ASBrS). She is as big on ideas as she is petite in stature and for actively tweeting on medical topics (@DrAttai). Assistant Clinical Professor of Surgery at the David Geffen School of Medicine at the University of California Los Angeles, Dr. Attai is immediate past-president of the ASBrS, which held its annual meeting in Dallas in April.
In her presidential address and in an interview with The ASCO Post, Dr. Attai discussed her commitment to the mission of patient-centered care. She credits Twitter with triggering this passion. In 2010, Dr. Attai witnessed the swift emergence of social media and, as chair of the ASBrS communications committee, viewed it as a means to increase the visibility of her society. Once on Facebook and Twitter, she was startled at what she found.
“What I found was a very large breast cancer community, from newly diagnosed women to those with metastatic breast cancer, all supporting one another online,” revealed Dr. Attai. “And I stumbled upon conversations among women trying to find answers to very basic questions that I felt should have been answered by their physicians. Some women were truly uninformed, but many were simply overwhelmed.” From this inside peek into the world of patients, she surmised that while oncology providers were often providing information, patients were not necessarily hearing it. “We tell them to slow down, take time to absorb what we say, but patients feel they are in a race for their lives,” she added.
Patient-Centered Care: Getting It Right
Today’s patients are especially engaged in their care, and many want equal partnership with their clinicians. “‘Nothing about me, without me’ has become a tag line for many patient organizations,” noted Dr. Attai.
In 2001, the Institute of Medicine determined that the difference between current care and ideal care is “not a gap but a chasm.” One thing lacking was patient-centered care: health care that is respectful of and responsive to the individual patient’s needs and values.
According to Dr. Attai, patient-centered care that really serves the patient includes a few specific components. At the heart is the incorporation of patients’ own preferences and values. For example, treatment designed to reduce recurrence may compromise quality of life, and “who are we to decide how important that endpoint is for them?” she asked.
The best care also honors the partnership between patient and provider. “It has been said that in a true patient-centered universe, neither the patient nor the physician is king,” she explained. “Patient-centered care is a measure of quality, one that we all have to rise up to meet,” she told attendees. “As individuals and as an organization, we have the courage to treat our patients as partners.”
Patient Surveys: Enough Already!
The use of surveys is one way that various stakeholders aim to “get to this place of patient-centered care,” she said. The problem, according to Dr. Attai, is that patients have survey exhaustion: They are assessed by every health-care provider, every imaging facility, every pharmacy, and even state cancer registries.
“We send out surveys to satisfy regulatory requirements. We can check off the ‘patient-centered box’ and feel like we are providing patient-centered care—after all, we asked patients for their opinions. But this is done without the promise of action or the sense that their voice will be heard,” she said. “At some point, the patient simply says, ‘Enough. Stop.’”
The ASBrS aimed to get the patient survey experience right. In 2012, the Society created the Patient Experience Survey after evaluating its existing survey and finding it suboptimal for measuring the experience of patients with breast cancer. The subsequent survey took into account the procedures that are more tailored to patients with breast conditions; patient advocates helped refine and validate it.
“With their input, it became clear we don’t always know what outcomes are important to patients,” she said. “Without that critical piece of information, we can’t really assess the quality of our care.” Patients are invited by their surgeons to take the Patient Experience Survey online. Responses, which are anonymous, are available to surgeons.
The ASBrS has developed a number of other resources that may help its membership meet the high standards for patient-centered care. The first step was to form the ASBrS Patient Advocacy Liaisons (PALS), a cadre of patients who partner with the ASBrS on various projects. “These patients understand what we are about, and their only agenda is to help us improve the care we provide,” said Dr. Attai.
The ASBrS also created its own shared-decision aid—Nurse BEDI (Breast Education Decision aid Instrument)—which is intended to be jointly used by patients and physicians, and a patient website, Breast360.org, which was designed because patients wanted information from their surgeons—who are often the first point of contact after a diagnosis.
The patient voice is also heard in other ways—through participation in special sessions of such topics as contralateral prophylactic mastectomy and input on clinical trial design. “We need to know the endpoints that are most relevant to our patients,” she explained. “It’s been noted that patients are the most underutilized resource in health care. We are surrounded by patients and need to take advantage of this incredibly valuable population,” admitted Dr. Attai.
Surgeons: Not Just About the Scalpel
In an interview, Dr. Attai spoke to the broader role of today’s breast surgeon, who is often the first oncology provider to see a patient. Therefore, the surgeon needs to understand the whole spectrum of the breast cancer journey.
The ASBrS Annual Meeting program reflects this effort, offering sessions not only on surgical procedures, but on genetic testing, HER2 disease, neoadjuvant chemotherapy, survivorship, and other such topics. Knowledge of these topics heavily informs surgery and the whole cancer experience.
“As surgeons, we need to know everything about breast cancer,” Dr. Attai emphasized, “and we need to understand not only the science but also how to explain it to patients. Breast surgeons often consider themselves to be the primary care doctor for the breast…. Today, they do more than operate, as evidenced by the wide variety of topics covered at our meeting.” ■
Disclosure: Dr. Attai reported no potential conflicts of interest.