While we often tell the story of COVID-19 in numbers, it’s important to also tell the story in more human terms: family members and friends we lost and the patients who died in our care or in our healthcare organization. This more personal perspective is one that dominates the hearts and minds of professionals in what we call patient experience.
As we continue to navigate the changing landscape of COVID-19, it seems appropriate to reflect on and honor the experiences of patients and caregivers over the past year. We do this in hopes of moving ahead to experiences that are humane, effective, equitable, and empathetic for all of us: patients, families, and the healthcare workforce.
How has the pandemic changed the patient experience?
Adrienne Boissy, MD, MA, is chief experience officer with Cleveland Clinic, and a staff physician at the Cleveland Clinic Mellen Center for Multiple Sclerosis. During this pandemic, Dr. Boissy saw leaders in the space step up to join in the work of operations and marketing, raising awareness and making a lasting impact. “A lot of times my fear is that we're relegated to the kindness bucket. There's so much more to the capabilities that many of us bring to the table.”
Dr. Boissy finds a kindred spirit in Alan Dubovsky, chief patient experience officer for Cedars-Sinai Health System in Los Angeles, California. “To say this year has been unprecedented is the understatement of the century. But I’m so proud of all of us as a patient experience field. Surveys were still going out, feedback measurement and physician and clinician skill-building still happening. But we also jumped in for temperature screenings, mass delivery, checking in on patients, and coordinating virtual visits.”
Dubovsky has seen a shift in perceptions during 2020. “People appreciate how much it needs to be a part of the conversation. We thought we knew what our patients wanted, and I think we were pretty close to that, but this year even our patients didn't really know what they want and need. Every time there's been a major policy shift, or visitation change or in [personal protective equipment] and everybody around us is nervous, I have found patient experience to be the voice of reason, just reminding people it's possible, it's doable, and here's where it's working and when it's not. I think that's a pretty powerful place to be at the table.”
As change happened moment to moment, teams helped navigate decisions with patients and families in mind. Rick Evans is senior vice president and chief experience officer for NewYork-Presbyterian (NYP), a nonprofit academic medical center with 11 facilities in and around New York City. Evans leads ongoing strategy to enhance patient and family experience and enterprise-wide efforts to improve access and the consumer experience across NYP’s network.
“We were already working on the consumer side of things, attending to people's preferences and convenience. COVID-19 just put that on steroids. We began doing a lot more telemedicine, but healthcare was sort of tiptoeing toward that, and we ran through it overnight. We can do things quickly—we've proven that. A lot of things that were irritants to patients, like waiting rooms, clipboards, all those things are just not good now. We've become accelerants to moving all that forward.”
Honoring Vulnerability in the Healthcare Workforce
Beyond the enormous pressures facing patients and families during the COVID-19 pandemic, stress on healthcare workers was front and center. In Los Angeles, Dubovsky saw a new vulnerability among staff. “We spend our time as patient experience people saying like, ‘Imagine yourself in that bed, and imagine if you were the patient's caregiver,’ and that's really tough to do—until the whole world goes through a pandemic together and we actually all are scared. The visitation policy is a perfect example. How do you take scared employees who don't want to be exposed to a virus, and balance that with the patient experience? It's making us realize that we all are more vulnerable than we ever thought we were.”
At Cleveland Clinic, Dr. Boissy was struck by the beauty of gratitude pouring in from patients, and seeing people in New York on their balconies singing or applauding for healthcare workers. In his New York apartment, Evans recalls every night at 7 pm he and his son would listen. “Oh, dada, they’re applauding for you,” his son would say. “I never thought about that, but I felt more emotional myself thinking, ‘You know what, maybe they are. Maybe this is for all of us,’ and how much we needed it.”
There is common agreement that mental health for patients and healthcare workers must remain a focus moving forward—from finding ways to simply thank staff to taking more proactive steps. Evans is seeking new solutions at NYP. “Leadership in this new phase is going to mean asking, ‘What should we be doing?’ I think that means normalizing feelings and making it okay for people to say, ‘I don't feel good. I don't have any patience left. My reserves are gone,’ and presenting supports and resources to our staff, our colleagues, in a way that we never had before.”
Chrissy Daniels is chief experience officer with Press Ganey, an organization helping healthcare providers to understand and improve care delivery. Daniels recognizes that society has a new view of healthcare workers. “We measure both the caregiver experience and the patient's experience. We are encouraging organizations more than ever, that while we listen to our patients, we also need to protect and support our caregivers.”
Jen Horonjeff, PhD, is a passionate patient advocate and the founder and CEO of Savvy Cooperative, a patient-owned co-op facilitating collaboration in healthcare innovations. As a patient advocate, she is pleased to see gratitude for caregivers growing. “Through the lens of somebody with chronic illness, you build these relationships. I also come from a family of providers. Listening to what my mother and sister are going through, wondering will they get phased out because they're choosing their health over other concerns being pressed upon them. As patients, we want our providers to be safe. It's not just gratitude, it's concern for the people we genuinely care about because they have offered us care.”
Post-COVID-19: Improving Patient-Centered Care
It is hoped that lessons learned in the pandemic will form better experiences for patients for the future. Evans of NYP says, “A prime example is home visitation. We shut down because we didn't know what we were facing. But we have learned a lot and we can never go back there. That was an unfolding tragedy, alongside the tragedy. We're talking to our patients, and they've got lots of suggestions about how we can do that differently, not only for the remainder of this COVID-19 crisis but in any crises to come. Patients have to lead the way.”
“Two things have allowed us to rapidly innovate,” said Daniels from Press Ganey. “One is that we connect more as a community. The second is designing with patients. We cannot afford the wasted time that we spend designing for patients. Bringing more patient voices in real-time is key to keeping us agile and consistent.”
Horonjeff sees the need to do faster innovations and accessibility for all communities. “I hope that we can always keep that in mind, that we don't want to leave anybody out when we are innovating in healthcare.”
“I'm not as patient anymore,” said Evans. “…I want to fix things now. And now that I know we can really do it, I want to do much more of it, really wanting to maintain that aggressiveness for better healthcare when this is over.”
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