“You would think four points lower in a domain doesn't sound like much, but in the patient experience world, that's actually a huge decline” says Rick Evans, senior vice president and chief experience officer at NewYork-Presbyterian. “That was the equivalent of falling off a cliff. It was alarming to see, and only in the last couple months has it started to begin to tick back up.”
Evans says this work is made somewhat easier by the fact that patient experience has evolved into something like a discipline. A body of knowledge has developed around understanding patients’ perceptions of their care, and the ability to collect that data has gotten better and broader, Evans says.
The HCAHPS survey is imperfect but being improved, Evans notes. “The standardization of those measures across the country was a great leap forward and really helps us to compare to each other,” he says. “That benchmarking ability is really critical in any kind of improvement work. Over the years, as we've identified issues that need improvement, a whole body of evidence-based best practices has emerged, so that if you're asking a nurse leader or practice manager to improve their patient experience ratings, now we've got tactics and tools that are evidence-based, that have been proven to work. It has gotten much more strategic, much more data-driven, much more evidence-based. I would say that there's almost a discipline now within healthcare around this kind of work.”
The VA Way
At the U.S. Department of Veterans Affairs, a turnaround on patient experience actually preceded the pandemic. Several years ago, the Veterans Health Administration partnered with the Veterans Experience Office (VEO) to create a standardized patient experience for all veterans receiving care at all sites across the country. A 2017 Journal of the American Medical Association (JAMA) article noted that VA hospitals performed better than non-VA hospitals on several outcome measures but performed worse on certain patient experience measures and behavioral health. That article was one of the factors that led the VA to create the “VA Way” effort to deliver an enhanced experience, says Jennifer Purdy, director for patient experience in the VA’s Veterans Experience Office.
In order to be more responsive to patients’ comments about their experience, the Veteran Experience Office stood up what Purdy calls a near-real-time feedback system with a platform called Vsignals. When a veteran completes a medical appointment at the VA, within two weeks they are sent an e-mail asking how that experience went. They are asked a series of questions depending on what journey they're on — whether they have received outpatient services or have been discharged from a medical center or been to an emergency department.
“We look at the moments that matter most to those patients in those journeys, and that's what we measure on Vsignals,” she says. “As soon as the veteran submits their response, it automatically populates our database. Our near-real-time survey gives us the opportunity to know what's going on right now, and gives us the opportunity to correct things more quickly.”
The VEO has seen strong results from the renewed effort on training and more nimble feedback mechanisms. For instance, veteran trust in the system has gradually improved from 47 percent to 79 percent over the last six years.
“Of course, we want to continue to improve, but I think back to when we started, the VA had come off a period when wait time issues arose in Phoenix, and there was a lot of media about the inability to get appointments, so there was a lot of distrust in the system,” Purdy explains. “When we were standing up the Veterans Experience Office, we knew we had to rebuild the public trust of VA. The way we build trust is by meeting with veterans and knowing what matters the most to them. Of course, they don't want to wait more than 20 minutes to get into their appointment. But oddly enough, when we talked to veterans, that wasn't one of the moments that stood out the most to them. What really mattered to them is: how do I get to my appointment and then once I'm in there, how do I have a trusting relationship with my provider? How do I know what's next in my care?’ Knowing that about them has helped us build that trust throughout the system.”
Incorporating the patient voice
Another avenue that health systems have explored to better understand and improve the patient experience is the creation of patient advisory councils (PACs) or patient and family advisory councils (PFACs). According to a recent survey by the American Hospital Association (AHA), 51 percent of hospitals reported that they have some form of patient advisory council.
Barbara Lewis, a marketing executive who has served on a Kaiser Permanente Southern California PFAC, became a reluctant expert on the topic of PFACs after her sister Joan died of an unknown infection in Florida in 2012.
“I wrote a document about her care and sent it to the head nurse of the ICU, who told me that she cried when she read it,” Lewis recalls. “She sent it to the CEO, and he passed it along to the other heads of the health system. They flew me across the country to make three presentations at their facilities. I was shocked that after each presentation, there was a line of people to tell me their stories. And at the end of the trip, I realized that this wasn't my personal story, but it was really a universal narrative. I decided to close my marketing company and devote the rest of my life to improving the patient experience.” She now researches, analyzes, and writes reports about PFACs.
From her own experience, she says, Kaiser Permanente Southern California is one of the examples of a very strong PFAC network.
Across the Kaiser Permanente enterprise, there are 82 Patient Advisory Councils that focus on a range of areas including local medical center operations, mental health, autism, NICU parents, teen, transgender, oncology, and more. While most PACs are English-speaking, Kaiser also has several Spanish and Chinese language PACs.
One of the key differentiators for Kaiser Permanente is that leadership is committed to the importance of the PFAC, Lewis stresses. “As a matter of fact, the vice president in Southern California had said that if you have an initiative that's patient-facing, you must have patients involved from the start,” she adds. “They've seen over the years that the PFACs can have a lot of impact.”
From her study of how they operate, Lewis says it is important for a strong PFAC to have a very comprehensive process. “Kaiser Permanente, in general, is very process-oriented, and this is no different,” she says. Business and clinical teams must submit an application if they want to bring something to the PFAC. There's a pre-meeting about what will happen at the meeting and documents are shared ahead of time, then the meeting occurs. Then there's a survey about whether the PFAC members got what they wanted from the meeting. That information goes back to the department. Finally, the department has to come back months later and talk about the impact that the PFAC had on what they had proposed. “That's very important,” Lewis says, “because it's really closing the loop.”
With the recent increased focus on health equity, health systems strive to make sure their PFACs represent their patient population. “When I'm helping health systems set up PFACs, one of the first things that I recommend is that the health systems start analyzing their demographics so that they know who they're serving and how that should look for the patient and family advisory councils,” Lewis says. “The problem is that most PFACs attract retired people who can meet during the day and who are not necessarily representative of the patient population of the health system. The health system has to make a commitment that they are willing to meet at night or during the weekend and have people on the PFAC who are willing to do that.”
Lewis notes that the pandemic really separated health systems with strong PFACs from those that are less serious about it. “A lot of PFACs have not been meeting for the past few years,” she says, “but Kaiser Permanente did exactly the opposite. They immediately went virtual. They said, ‘Your voice is so important to us that we want a special team that can give us feedback within 24 hours of our messaging about the virus.’ Now that PFAC became really important. But I think if it was just kind of a check-the-box approach and you didn’t have a process in place, and you're not tracking the metrics of how you're improving by listening to the patient voice, when it came time to go virtual, some health systems just said forget it. Some hospitals just couldn't see the value in doing it virtually. In doing surveys, I found three hospitals that had closed their PFACs. I called them and it turned out each one coincidentally had a new CEO.”
Measuring telehealth experiences
With new digital health and home-based care modalities becoming more common, health systems and startups have had to find new ways to measure experience in those settings. Bicycle Health, a digital health organization that provides biopsychosocial treatment of opioid use disorder (OUD) via telehealth, launched a telehealth Patient Advisory Council (PAC) to get better feedback.
Success in treatment of opioid use disorder depends almost entirely on the experience that you create for patients, explains Brian Clear, M.D., Bicycle Health’s chief medical officer. The treatment for it is quite straightforward. However, whether it's successful or not depends on if the patient takes it as directed and stays in treatments for as long as is recommended. “Everything is about patient experience,” he says. “Historically, half of all patients who start treatment for opioid use disorder will stop that treatment against medical advice within the first three months. And that almost always results in a return to problematic opioid use. So really understanding the patient experience and what drives patient adherence and engagement and treatment is everything. Through our successes with the PAC and also through other innovations, we've been able to see about a 75 percent 90-day retention rate in treatment. So compared to most in-person programs, instead of half leaving within 90 days, we only see about a quarter, which is an incredible improvement.”
The council’s most important contribution has been communication, Clear says. “We were able to leverage the council to review communications and materials that are going to be sent out to patients. Almost always, the council had great suggestions for rewriting the language in a way that seemed less stuffy and academic because it was written by a bunch of doctors and rewriting it in a way that really resonated with patients and would be clearer and feel more accessible to patients. The PAC even rewrote the recruitment materials used to recruit patients into the PAC, and we saw an improvement in recruitment after they did that.”
Building trust with the PAC is the key, Clear says. Half or more of these patients used prescribed pharmaceutical opioids as part of their pathway to addiction to opioids, so there is an almost universal experience of having negative healthcare-related experiences in the past and feeling wronged by the healthcare system, he adds. “We have to explain that we do care about this condition. We see these negative experiences that you've had in the past and we're doing something with your help to try and make things better for you and for patients who are in the same boat. It takes time to get that message across and really develop trust. I think the first six months of PAC sessions were mostly devoted to trust-building before we really got into quality improvement work.”
Rebuilding the house
In describing what NewYork-Presbyterian did to address the decline in patient experience scores, Evans uses a construction analogy. “It is like we built a beach house by the ocean, and we spent years building it and then a hurricane came and wiped it down to its foundation, so we've had to rebuild the house,” he says.
That involves getting citizenship behaviors back in place where employees are aware of who's around them and are thinking about how they can help people — taking their earbuds out when they walk into work because they are now in the presence of patients and families. “These are basics that all of us should be doing to make sure that our environment is welcoming,” Evans says. “We had to put those back in place. It is like the equivalent of a COVID booster shot; we needed a citizenship booster shot. We needed to train all of our new employees, some of who were new to NYP and some of whom were new to healthcare. Some of our new employees didn't know the NYP way of introducing yourself to a patient. What's the NYP way of answering a phone with someone who needs help? What's the NYP way of helping someone at a desk?”
Other practices that had been dropped during the pandemic emergency had to be reintroduced, such as a bedside shift report, where one nurse who is leaving work talks to the nurse starting their shift in the presence of the patient and introduces that nurse and explains what is going on with the patient. “All of those practices had gone by the wayside because people were rushed trying to get through their shift,” Evans says. “One by one, we have been bringing those best practices back.”
One lesson learned, Evans adds, is that they can't throw all this at people all at once. “Over the last 24 months, we put together a strategic plan and presented it to our board of trustees. It's a three-year plan, but it has been titrated. As staffing has recovered, as other things have gotten easier, we're introducing layer upon layer back. We're trying to be very sensitive to our teams — to push ourselves to get better as best as we can, but to not overwhelm them.”
Evans says this work is already showing great progress in terms of patient experience scores. “Right now, we are having our best quarter ever, even before the pandemic. We began to recover in 2022, and now we're seeing accelerated improvement in 2023. We're hoping that reflects that we picked the right plan, and that it's working.”
