The neonatal team at Children’s Hospital of Philadelphia (CHOP) plans to implement a bedside camera system so parents and families can see their babies remotely. The team expected that parents would want this service available around the clock, but a representative from the hospital’s Family Advisory Council, composed of patients and their families, pointed out that an “always-on camera” could be a detriment to parents of newborns.
“‘If you have this available 24/7, I’d turn it on at 3 or 4 in the morning and never get rest,’ a council member told us,” says John Chuo, MD, MS, who is Improvement Advisor, Neonatal Quality Officer, and Clinical Champion for Value Measurement of Digital Health at CHOP.
CHOP has found family councils useful for brainstorming ideas and reviewing policies and procedures. “Providers and administrators might have good intentions, but it doesn’t mean we are always right,” Chuo says.
In the NEJM Catalyst Insights Council survey, “Measuring What Matters and Capturing the Patient Voice,” respondents rank the creation of patient representatives and patient councils as the most promising trend for capturing the patient voice (selected by 49%).
Chuo advises hospital leaders to have processes in place to integrate a council and its advice into operations. “If you want to hear a patient’s voice, be ready to change,” he says.
Patient voices come in many forms, says Linda S. Melillo, MA, MS, CPHRM, CPXP, System Director of Patient Experience at the four-hospital health system Penn Highlands Healthcare, based in DuBois, Pennsylvania: surveys, complaints, social networking, telephone calls, and even conversations that staff members have in the community. “How do we gather that information in a way that we can include it in how we evaluate patient feedback? How can we integrate it all in one place and get it back to the people providing care?” she asks. “In health care, we don’t often focus as consistently on comments as we do the statistics and the outcomes.”
Part of the challenge is to blend the myriad channels that capture the patient voice into a clear and concise message for hospital staff. Melillo tries different approaches. “I appeal to their compassion and the reasons they entered the health care field. We have to find a way to connect with each individual to engage them. If they are competitive by nature, I show them how they are doing against their peers, as well,” she says.
After recognizing a common pattern in service issues from patients — not about the care they received, but how they were treated — she began sharing video clips that vividly capture the patient voice in the health system’s new hire orientation. The videos are also being rolled out to all staff.
An organization’s top executives must make patient experience a priority for it to take, Melillo says. “We need the backing of leadership to make sure all staff are comfortable sharing information. They can cost a system in terms of turnover, disgruntled employees, and HR time to deal with the issues,” she says. “Nobody is that good that they can’t be replaced — especially if they are not addressing patient needs and contributing positively to the patient experience.”
Nearly three-quarters (73%) of Insights Council members responding to the survey say that systematically incorporating the patient voice into health care delivery is a major difficulty. Half of respondents say patients usually lack a deep understanding of medicine and/or health care delivery. Chuo says better communication is often the remedy.
CHOP recently introduced telemedicine into the discharge process for complex neonatal patients. While families have given positive feedback on the clinical aspects, including the chance to touch base with familiar providers before going to their first pediatrician appointment, some reported difficulty setting it up on their devices once they were at home. In response, the CHOP telemedicine team changed the set-up process to ensure that the telemedicine app is downloaded and demonstrated on patient devices before they leave the hospital.
“The sooner we learn something, the earlier we can improve,” says Chuo. “There is tremendous value in learning from even [just] one family member. The process of improvement should never be delayed because you want to collect more feedback; it should happen in parallel.”
Figuring out how to define and measure the patient voice can be difficult, says Joel Rosen, MD, Vice President of Medical Staff and hospitalist at Christus St. Vincent Regional Medical Center, a 200-bed hospital in Santa Fe, New Mexico. “We haven’t had a lot of innovation in this realm yet,” he says.
Part of the challenge for Christus St. Vincent, which only recently launched a patient council, is the geographic region it serves. “We cover a huge space that is very diverse,” Rosen says. Like 44% of respondents to the Insights Council survey, he considers individual patient voices non-representative, which creates a barrier to truly capturing the patient voice. For instance, alcoholics — who form a large part of his patient panel — are not well represented on the hospital’s patient council.
Rosen considers consumerism in the health care industry a promising trend for capturing the patient voice, as do 48% of survey respondents. “In the era of Yelp, where everyone is weighing in on everything, it drives me crazy as a clinician and a physician, but I know there is a lot to learn from review sites. Patients are now customers and there is value in that,” he says.