Engaging patients and their families in hospital-level decision-making provides unique perspectives and valuable feedback to improve outcomes.
In the summer of 2014, Aldo Palmieri, MD, a specialist in obstetrics and gynecology at UCLA Medical Center, Santa Monica, began to feel unusual abdominal pain. After a few weeks of hoping the pain would go away on its own, he finally visited his primary-care physician. The diagnosis: stage IV mantle-cell lymphoma, a rare form of non-Hodgkin’s lymphoma. Within three weeks, he had surgery to remove part of his small bowel, followed by six rounds of chemotherapy and, eventually, a stem-cell transplant.
“I felt very much like a mystery shopper — the shoppers that companies bring in to ensure that their employees are nice,” he says of having his care delivered at the hospital where he works. “People did not know who I was. I did not wave around my ID to say I was UCLA faculty.” And yet, Dr. Palmieri, whose disease has been in remission for nearly a year-and-a-half, quickly found that those credentials weren’t necessary for him to receive the highest standard of care. “I had a near-flawless experience in the system. I trusted UCLA for the treatment for my condition, and that trust was never threatened,” he says. “The staff — the nursing staff, the care partners, even the person who brought my food tray when I was in the bone-marrow unit — invariably were wonderful people.”
His experience as a patient, Dr. Palmieri realizes today, had a profound impact on how he now practices medicine. “I don’t think anyone, be it a nurse, be it a care partner, ever left my room without asking if there was anything else they could do for me. It meant the world. It would be impossible for something like this not to affect me and how I practice my craft. I now never leave a patient’s room without asking if there is anything else that I could do for them.”
In a perfect world, no other healthcare worker or member of the administration at UCLA Health would have to share Dr. Palmieri’s unique insider’s view. An increasing number do, however, embrace an emerging belief in healthcare: that the experiences, perspectives and opinions of patients and their families are vital for improving services, clinical quality and medical outcomes and shaping the overall patient experience.
THE IMPORTANCE OF THE PATIENT VOICE IS MADE CLEAR at UCLA Health from the first day of employment. A measure of that task falls on Lee Tomlinson, a patient-centered-care advocate and UCLA Health patient-care advisor. Three years ago, he was diagnosed with stage III throat cancer. Toward the end of his chemotherapy and radiation treatments, Tomlinson developed an infection that nearly killed him. “I am sure that my treatment was medically superb — I survived,” he says of the care he received at another hospital. “But the way I was treated was so insensitive, so lacking in kindness, caring and thoughtfulness, that I literally gave up hope of surviving and decided that I wanted to die.”
A friend of Tomlinson’s, a doctor, suggested that what he had been subjected to was not indifference, but rather poor customer service. “He encouraged me to become part of the solution and use my experience in customer service to talk to doctors, nurses and medical professionals and remind them of the enormous importance of care versus treatment,” he says. Today, Tomlinson volunteers his time every Monday during UCLA Health’s “Day 1” orientation for new hires. He tells his story, focusing on the importance of compassion. “Most people get into medicine with an innate compassion, a desire to help people,” he says. “The challenge is when the minutiae of these incredibly difficult jobs start to pile up, and they get more attached to what as opposed to how. So I speak to the new hires, and I say, ‘Look, at the end of the day, this is about patients. No matter what you are doing, when you are in the presence of a patient, you need to express the compassion that got you into this business. That can make the difference between life and death for us.’”
Such a patient-centric view is diffusing throughout the healthcare system. “Healthcare has not historically looked at patients and family members as partners in improving our services. That is rapidly changing,” says Tony Padilla, chief patient-experience officer at UCLA Health.
In the past, for example, patient satisfaction was assessed only through post-care surveys. The surveys were interpreted by physicians, managers and administrators, who then tried to come up with solutions to various issues. “We have learned that when we bring patients to that same improvement table, the definition of the problem changes, and we find better solutions for improved care,” Padilla says.
AN INCREASING NUMBER OF HEALTHCARE FACILITIES nationwide, and around the world, are formalizing systems to engage and partner with patients and patient families to improve care. In 2015, the Beryl Institute — an organization focused on improving the patient experience — conducted the “State of the Patient Experience” study, polling more than 1,500 hospitals (including 773 in the U.S.), as well as long-term-care facilities and other healthcare organizations. Forty-two percent of the organizations surveyed reported having a senior patient-experience leader guiding their efforts, compared to 22 percent in 2013; 55 percent reported having patient/family advisory committees, up from 32 percent just two years earlier.
|Members of the neurosurgery Patient and Family Advisory Council (PFAC) work closely with physicians and leadership to foster and improve patient-centered culture. PFACs originated at Mattel Children’s Hospital UCLA and now are active as well in the geriatrics, neurosurgery and behavioral-health departments.|
At UCLA, these advisory committees, known as Patient and Family Advisory Councils (PFACs), are led by physicians and hospital leaders and coordinated through Padilla’s Office of the Patient Experience, and they are considered essential to UCLA Health’s patient-centered culture. PFACs originated six years ago at Mattel Children’s Hospital UCLA and now are active as well in the geriatrics, neurosurgery and behavioral-health departments.
“The Parent Advisory Council (at Mattel Children’s Hospital UCLA) is made up of a group of at least a dozen very dedicated parents of some of our medically complex, medically fragile children — kids with cancer, genetic diseases, children in need of a transplant and other conditions,” says Kerry Gold, RN, administrative and pediatric-liaison nurse in the David I. Saperstein Emergency Department at Ronald Reagan UCLA Medical Center. “The parents meet monthly to discuss current issues and, perhaps, methods for improving the care for their kids.”
In 2012, a suggestion from the Parent Advisory Council led to the development of the Pediatric Passport. In its initial incarnation, the Passport was a one-page document carried by parents that contained information, including the child’s name, medical record number and diagnosis and key facts, such as whether or not the child has a central line or a catheter or is prone to frequent bouts of urinary-tract infections or sepsis.
“The Pediatric Passport is simply a form that a specialist would fill out to say, ‘This is my patient, and if this patient presents in the emergency department, this is their diagnosis, and if you need to call me, here is my pager number,’” Padilla says. Beginning in January 2016, the Pediatric Passport — which has served as a model for similar passports at hospitals around the country — has become part of the patient’s electronic medical record, allowing it to be immediately observed by the triage nurse and emergency-department physician. “It is not a ‘FastPass,’” Gold stresses. “It is more of a red alert for the triage nurse that allows him or her to streamline care.”
Other suggestions from the parent advisors have led to 24-hour coverage by hospitalists in the emergency department, the addition of a white board in every patient room that displays vital information such as the names and phone numbers of the child’s nurse and care partner and updates on pending procedures and the standardization of the techniques used by nurses to access pediatric patients’ central lines.
The PFAC at the Stewart and Lynda Resnick Neuropsychiatric Hospital at UCLA is similarly designed to foster a partnership among patients, families and administrators and staff. The 16-member PFAC — comprised of eight patient/ family advisors and eight Resnick staff members — meets monthly, with discussions centered on three target areas: patient safety, navigating the system and patient and family satisfaction.
“The safe discharge/rapid improvement project is something that we started,” says Resnick PFAC member Glenn Kopelson, who was asked to be a member of the council following the hospitalization of his son. “We want to develop a process for contacting patients and families post-discharge to make sure that everything is going according to their discharge plan. When someone gets discharged, the families wonder what will happen next. It is a stressful and anxiety-driven time for a parent. This is a way to help patients and families continue to navigate their treatment and to help alleviate the anxiety. A key goal of this PFAC is to make that experience better for patients and families.”
UCLA Health recently has broadened the scope of PFACs, creating the Patient-Centered Technology Council to offer input about the health system’s electronic health-record system, including its web, phone and bedside apps. One member of the patient-focused technology council is Sharon Young, MD, a physician by training with a background in emergency medicine who now works for a clinical-decision-support company. Dr. Young was recruited to join the relatively new council after she experienced difficulties with the mobile app for patients. “I kept going back and forth with a support person because I was frustrated that there were features that were not accessible through the mobile app,” she says. While initial development may have been focused primarily on the website app, “I knew from being involved in this industry that the mobile application is even more important, especially for patients in some of the lower socioeconomic demographic groups who may not have access to a full desktop.”
BEYOND PFACS, UCLA HEALTH PATIENTS NOW ARE BEGINNING to be integrated into hospital committees, where they sit alongside medical personnel. Beginning this year, the hospital’s infection-control committee will be adding at least one, and perhaps more, patient representatives. The committee, which meets monthly, is designed to present and analyze data on patient safety — specifically on hospital-associated infections, with the goal of trying to decrease these infections over time.
“These are very sensitive topics for hospitals and for healthcare workers,” says Zachary Rubin, MD, medical director of UCLA Clinical Epidemiology and Infection Prevention. “Having a patient on the committee is a great benefit to the healthcare workers on the committee because it gives us a little grounding in reality. I think sometimes we get used to seeing numbers, and we don’t realize that each number is a patient. Sometimes we forget the big picture. The patient voice is critical to designing better patient-level interventions that the patients can understand and comply with. It is not always comfortable, but that’s part of the idea.”
To help recruit new patients and families who might lend their voices to the rising chorus, the UCLA electronic-health-record website now offers a link through which patients or families can offer their services. “All UCLA Health patients can now let us know if they are interested in responding to email surveys, in attending patient-advisor events or in being on a patient advisory council,” Padilla says. He has an ambitious goal for the project: to enlist 1,000 patient advisors this year.
“We will know that our partnership with patients and families is fully mature when there is a patient representative on every improvement and decision-making committee in the health system,” Padilla says. “Patients are our most important stakeholders. They own the care and the process, just as much as the people who work here, and they should help us define how we are managed, what changes are made and what value really means to patients. Ultimately it is about partnership.”
Kathy Svitil is director of news for the California Institute of Technology and a frequent contributor to U Magazine.