The Art of Listening: Using Patient Feedback to Improve Cancer Care

By Jennifer Castoro,

Wednesday, November 22, 2017

Vincent Laudone, Chief of Surgery at the Josie Robertson Surgery Center
Summary

What’s the best way to give patients the exact care they want and need? Ask them how to do it.

Picture this: You’re recovering at home after having surgery to remove a tumor. The day after your operation, you’re still feeling some pain, plus a little nausea. You think your symptoms are nothing to be alarmed by, but how do you know for sure?

Then you remember that before you left the Josie Robertson Surgery Center (JRSC), your nurse told you that you’d be getting a message on MyMSK — the online patient portal you use to send messages to your doctor, check your appointments, and pay your bills — that would ask how you were doing.

You log on and see a questionnaire in your inbox. After you report that your pain is moderate and that you’re queasy, a pop-up notice appears saying your symptoms are normal, and that if they worsen to call your doctor’s office. Later that day, your nurse calls to see how you’re doing and reassures you again that your symptoms are typical. You breathe a sigh of relief, close your eyes, and drift off.

This self-assessment tool — which is currently in place for urologic, breast, gynecologic, and plastic surgery patients at the JRSC — utilizes technology to help patients in a more holistic way, by listening to their concerns and easing their anxieties.

“It’s critical to learn what’s important to our patients,” says Memorial Sloan Kettering Physician-in-Chief José Baselga. “It’s at the center of our efforts to make sure that we provide patient-centered care. And the only way to do that is by asking them.”

Creating a Virtual Hospital after Outpatient Surgery

The state-of-the-art JRSC is more than a “smart” building — it’s brilliant. From its inception, the space was designed to take advantage of up-to-the-nanosecond technology, with entire operating rooms customized for specific procedures, recovery rooms equipped with in-room video conferencing and bedside tablets, and a real-time location system that tracks patients’ movements around the building.

The JRSC’s creation presented the perfect opportunity to experiment with technology in other ways, as well as to gather feedback on all the advancements the building offers. And because of the unique short-stay model — patients are sent home within 24 hours of their operation — emphasizing that they’re not on their own once they’re back home became a priority.

It's critical to learn what's important to our patients. It's at the center of our efforts to make sure that we provide patient-centered care.
José Baselga
José Baselga Physician-in-Chief

“We had to be mindful not to put an additional burden on patients and caregivers,” says plastic and reconstructive surgeon Andrea Pusic, who has led the way in collecting data on patient-reported outcomes across MSK. “We have to be cognizant of the fact that ambulatory surgery, done in this way, could create anxiety for them. A system like this allows us to convey to patients that even though they’ve walked out the doors of the hospital, they haven’t left MSK. We’re extending the boundaries of MSK to make it a virtual hospital, to some extent.”

In the example mentioned earlier, patients receive a daily survey on MyMSK to report their symptoms, including their levels of pain, nausea, anxiety, and fatigue. They’re also asked questions about their surgical wound. If a patient reports a symptom that’s severe, an alert is generated and sent to the care team, who checks in with the patient during regular business hours. For very severe or worrisome symptoms, the patient sees a notice to call his or her doctor’s office immediately.

The program is part of a larger initiative, known as MSK Engage, to collect patients’ feedback across the institution. The process was designed with patients’ preferences in mind. “We needed to make sure the information was actionable,” says Peter Stetson, MSK’s Chief Health Informatics Officer, who is leading that aspect of the project along with Kevin Shannon and Laurie Ochs in Information Services. “If a patient tells us they have severe pain, we can’t sit on that — we need to act.”

“After you have surgery, there are bound to be symptoms — pain, redness, other things,” says Kate Niehaus, Chair of the Patient and Family Advisory Council for Quality (PFACQ), which consults on a wide variety of projects across MSK. “What you’re really trying to figure out is when is it outside the boundaries of what’s normal. You don’t want to be alarmist, but you don’t want to overlook something that’s really significant.”

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Involving Patients to Enhance Surgical Outcomes

Soliciting feedback directly from patients is increasingly becoming the modus operandi at MSK. “It is not only something that opens our eyes tremendously, but it also enables us to better address patients’ needs,” says Dr. Baselga.

The PFACQ, an advisory group of current and former MSK patients, caregivers, and staff from across the institution, works on projects including designing and implementing clinical trials and offering a firsthand perspective on initiatives intended to improve patient care.

Patient and Family Advisory Council for Quality (PFACQ)
The PFACQ gives patients and caregivers the ability to have their voices heard.
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“Having patients involved fundamentally changes the questions that are asked, and the way they are being asked,” says Ms. Niehaus.

The goal of collecting patient feedback, ultimately, is to take those questions and concerns and use that data to make meaningful improvements in patient care, as well as to help their doctors make better decisions about care through the lens of quality of life.

In 2014, Dr. Pusic and surgeon Larissa Temple, who is now at the University of Rochester Medical Center, created PROSE (Patient-Reported Outcomes and Surgical Experience) to capture patients’ experience, before, during, and after surgery. They developed several questionnaires, including the Breast-Q for breast cancer patients, the Face-Q for head and neck cancer patients, and the Colorectal-Q for colorectal cancer patients.

In one example of the system in action, patients at the JRSC reported that their communication with their doctors after surgery could be improved. Surgeons typically visit to go over the details of the surgery right after the operation, in recovery — but the patients often didn’t remember. Now, as a direct result of that feedback, surgeons are testing the use of bedside tablets to have conversations with patients via secure video calls when they’re more awake and alert, in addition to the usual meeting they have with the patient’s family immediately after the surgery.

“We’re trying to be more nimble about quality improvement,” Dr. Pusic says. “We see an issue, address it, and test it again to make sure we’ve made a measureable difference.”

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Empowering Patients to Report Symptoms

Dr. Pusic, along with Dr. Temple, is also leading a trial funded by the Patient-Centered Outcomes Research Institute, an organization that supports research examining the issues that are most important to patients.

As part of the trial, 1,700 MSK patients having surgery at the JRSC will be randomized into two groups: one group will report their symptoms online and receive pop-up notices, as in the current model; the other will also receive additional information about how they are doing compared with people like themselves who’ve had the same procedure and are at the same point in their recovery.

“It would show you that on day three or four after surgery, most people start going down from a five to a four on the pain scale, for example,” says Dr. Pusic. “It will allow patients to see how they compare with others directly, and encourage them to be engaged and active in their care. It also will help them to feel empowered to call the team when they know something is wrong, as opposed to vague worrying.”

Beyond lessening the burden on patients and caregivers, as well as decreasing their anxiety, the effort is also intended to reduce the number of visits to MSK’s Urgent Care Center (UCC). Many patients who visit the UCC often do so because they don’t know whether what they’re experiencing is normal. They may simply need reassurance. “Coming back to the hospital is stressful,” says Dr. Pusic. “Many people come just to see if they’re OK, when they don’t actually need to be there. They don’t have anything to compare their symptoms with, so they don’t know what else to do.”

MSK surgeons Joseph Dayan and Babak Mehrara during surgery
Center for Advanced Reconstruction
Our surgeons perform hundreds of complex reconstructions each year and are dedicated to providing the highest level of care, personalized for each patient.
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One Goal: Better Cancer Surgery

Going forward, streamlining all the patient data that’s collected and making sure that all clinicians have access to it is a priority.

“We want to increase the meaningfulness of the data,” says Dr. Pusic. “We want doctors to be able to easily access the data before they meet with a patient, so they can use it to provide a better experience.”

Ultimately, the effort to ensure that patients feel heard and respected will be reflected in all aspects of their experience. “The fact that you’re being asked how you’re doing, that someone is checking in on you, is a point of comfort,” says Ms. Niehaus. “You’re not out there by yourself. Someone is watching and listening, and someone cares.”

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Comments

This is wonderful and necessary. I would like the same follow-up to be done for patients undergoing chemo. I hear too much of patients afraid to complain; afraid to let their drs know how they are suffering, in part because they fear that any adjustment to their chemo will affect the efficacy. I see this on Patient Cancer Forums all the time, and have to remind people to tell their doctors and chemo nurses about any and all side effects.

Sitting at MSK westchester and was told my husband’s mri was close to 3 hours delayed. He will not be taken inside until 8 pm. At 5:15 and wanted to grab a bite, wewhen we were told we must be back by 6. Now we were told that there were multiple delays throughout the day. A real lack of respect for patients coupled by a lack of integrity. We’ve been to multiple MSK locations and though this facility looks beautiful it’s core of employees, technicians and nurses are unprofessional and poor communicators. This is not the MSK way.

Dear Rachele, we're so sorry to hear that your husband had to to through this. Our Patient Representatives are committed to ensuring that your rights are respected and that your concerns are addressed. We have sent them your message, and you can contact them directly at 212-639-7202 to discuss this in more detail. Thank you for your comment, and best wishes to both of you.

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