COVER STORY · POPULATION HEALTH MANAGEMENT


“The vice president [of Kaiser Permanete] in Southern California had said that if you have an initiative that’s patient-facing, you must have patients involved from the start. They’ve seen over the years that the PFACs can have a lot of impact.”


— Barbara Lewis, who research- es, analyzes and writes reports about patient and family advi- sory councils at Joan’s Family Bill of Rights


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 cre- ation 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 reluc- tant 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 commit- ted to the importance of the PFAC, Lewis stresses. “As a matter of fact, the vice presi- dent 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 gen- eral, is very process-oriented, and this is no different,” she says. Business and clinical teams must submit an applica- tion 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 mem- bers 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 commit- ment 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 bio- psychosocial 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 straightfor- ward. 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 medi- cal advice within the first three months. And that almost always results in a return to problematic opioid use. So really understanding the patient experi- ence and what drives patient adherence and engagement and treatment is every- thing. 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 contribu-


tion has been communication, Clear says. “We were able to leverage the council to


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