Patients and Families: Key Partners in Improving Patient Experience
March/April 2013
Patients and Families:
Key Partners in Improving Patient Experience
Perhaps it is time for those of us in healthcare to realize that patients and families are no longer simply “receivers” of care offered by “providers.” In fact, the trend of engaged patients has taken on increasing significance in the larger healthcare dialogue. This is not only realized in ways such as the February 2013 issue of Health Affairs, “The New Era of Patient Engagement,” but in increasing discussions among patient advocates and others in healthcare. In his speeches, Dave deBronkart, known to many as e-Patient Dave (@ePatientDave on Twitter), shares with audiences his top foundational principle, “’Patient’ is not a third-person word.” This statement sums up the greatest lesson I learned in speaking with 18 courageous patients and family members, from healthcare practitioners to patient advocates, for The Beryl Institute’s soon-to-be-released paper, Voices of Patients and Families: Partners in Improving Patient Experience. I share just a few of those voices in this article.
The Power of Partnership: A Perspective of Integration
The central lesson is that patients are no longer “subjects” in the healthcare equation. In fact, those I spoke with suggested that patients will no longer play a passive role in care experiences. There is true value in their active engagement. Reinforced by the perspectives of these individuals, I believe the most critical opportunity on which to focus in healthcare may be that of partnership with the patients, families, and communities served.
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The Beryl Institute The Beryl Institute is the global community of practice and premier thought leader on improving the patient experience in healthcare. The Institute serves as a reliable resource for shared information and proven practices, a dynamic incubator of leading research and new ideas, and an interactive connector of leaders and practitioners. The Institute develops and publicizes cutting-edge concepts focused on improving the patient experience, touching thousands of healthcare executives and patients. The Institute defines the patient experience as the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care. You can follow The Beryl Institute on LinkedIn, Facebook, and Twitter (@berylinstitute). You can find the paper Voices of Patients & Families in late April and review other publications from The Beryl Institute at |
How is partnership realized? Through voice; not just spoken word, but rather the broader ability for patients and families to express themselves and their needs, ask questions, and even challenge the processes or situations in which they find themselves. When you engage a patient in their perspective, some things become clear very quickly and have great significance for those who work to improve quality, safety, or service every day. In examining what healthcare leaders have identified as experience priorities and then comparing them to what these patients and family members express as important, you discover that experience truly bridges the multiple points of focus in healthcare on quality, safety, and service.
In day-to-day healthcare conversations on operations and strategy, there is a tendency to segment work. This is a clear and understandable process considering the chaotic and expansive priorities faced. The need to manage this chaotic environment leads to static processes, segmentation of work, and often ultimately silo-based solutions.
From a pure business perspective, this is not bad, as it allows for work to get accomplished. The challenge for healthcare, though, is that getting the work done is only half the battle. Getting the work done while providing the best in outcomes for patients is fundamental.
This presents an interesting dilemma. Healthcare leaders may segment the work, but the patient does not. They do not distinguish between steps on the continuum of care, the work of units or departments, the purposes of processes or programs. They also do not distinguish between quality, safety, and service the way those “inside” healthcare might. It is the sum of all these interactions that equates to the experience of patients and families. Making the space for patient voices to be part of the healthcare process allows the best in quality, safety, and service to be offered in every encounter. This is the true patient experience, and it has serious implications for healthcare leaders across the care continuum.
Julie Moretz, nationally recognized patient and family advocate, director of special projects at the Institute for Patient- and Family-Centered Care and soon to be associate vice chancellor for patient- and family-centered care at the University of Arkansas for Medical Sciences (UAMS), offered, “Many times in healthcare we see the departments in silos, not working together. Once we can get beyond those silos, we can bring people together, shoulder-to-shoulder. It is in sitting together we can make things happen.”
Brooke Billingsley, co-owner of Perception Strategies, Inc., and a cancer patient, supported this in sharing, “A lot of times, everyone operates in a vacuum, and you’ve got these silos happening in healthcare where people are saying, ‘It’s not my business, I only do this portion of my business.’ So what you’re talking about, or complaining, or recommending, is out of my circle of influence. So, I’m just going to hear you and do nothing about it. That’s what I see that’s not happening, [a true listening] as the consumer is trying to give that advice.”
This powerful need for an integrated effort is something “providers” often miss in healthcare. This influences the way in which patients are engaged—as subjects rather than partners. The implications are significant, and I again suggest we cannot and should not be distinguishing quality, safety, and service, but rather looking for ways to integrate these efforts to ensure we create aligned, effective opportunities for overall patient experience.
If you agree that patients experience the sum of all of your efforts, and do not distinguish between the parts, this does not mean you should not have focused quality, safety, or service efforts. Rather it suggests you must be much better at coordinating and aligning these actions. This coordination was actually one of the significant perspectives shared by those interviewed and represents something much bigger than simply creating initiatives or implementing tactics; it represents understanding the broader implications of patient experience.
Patients as Consumers
In asking patients and family members about the importance of patient experience, understanding the power of patients as consumers emerged as a common theme. Dave deBronkart noted, “If I’m an executive responsible for the future of my organization, then I need to be aware of the increasingly competitive consumer-driven environment in which my organization will be operating.” Brooke Billingsley, added, “I think that as hospitals become more competitive and want those patients to come to them, then that focus goes back to the patient experience, and knowing that they have to offer more than just services. If you have services that are offered at two or three different facilities within a 20-mile radius, the patient experience is what sells that person to coming back. It is what caused me personally to drive to another facility.”
This perspective of the business implications was reinforced by Barbara Lewis, founder of Joan’s Family Bill of Rights (joansfamilybillofrights.com). She stressed, “Healthcare is viewed now as a business more than ever before. Healthcare systems have to be focused on the patient experience. Because there’s actually a financial reward, or disincentive, if they don’t have high patient scores. And so, the patient experience becomes very, very important to the business of a healthcare system.”
The realization these responses pose for those addressing patient experience is that the consumer is much more aware of the requirements and implications than you might believe. They are following what standards are expected, they are tracking results and making choices based on what they hear, see, and learn through research. Patients are consumers of your services and are taking on a broader perspective on what this means for them, with increasing implications for healthcare providers.
The Power of Listening: The Heart of the Matter
Perhaps the most significant theme emerging from my conversations with patients and family members was that of listening. They spoke of the difficult process of finding an effective voice as a patient and family member; one not seen as challenging the perceived “authority” that still permeates healthcare settings, and one that can genuinely contribute to the care process overall. As Barbara Lewis shared, “One of the most important efforts that healthcare organizations should take is to listen to the patients and the family members, and encourage the patients and family members to talk about the good, the bad, and the ugly stories of their care. Patient members are reluctant to speak up, and many have told me this.”
This reluctance is palpable and was shared among many with whom I spoke. What the contributors to the paper revealed was a similar path of finding personal strength to share their concerns, contribute their ideas, or provide their feedback. In almost all cases, these voices were not invited, but rather emerged as a developed muscle, driven by the circumstances they faced. This alone presents perhaps one of the most significant challenges I have seen in addressing patient experience: the lack of formal and regular means to invite or engage patient and family voice outside of “formal” processes such as advisory councils, regular surveys, or occasional focus groups.
Julie Moretz reinforced this point, suggesting, ”A huge thing that healthcare organizations can do is to make [listening] a part of their culture, so that it’s okay for the patient and family to speak up and to identify things that aren’t working right, and that the staff is ready to accept these ideas and thoughts. Because the bottom line is quality and safety, and I think when we have a culture where families can speak up, patients can talk about things that didn’t go so well, that leads to better, safer care.”
Patients and families have a sincere desire to not only share their voice, but also to actively contribute to the healthcare process, yet this remains something they often struggle to achieve. This makes the opportunity to provide a clear invitation to share and engage as active participants central to successful efforts. It is important to note that this is not to say every patient will want to engage or contribute, but without the process in place, you potentially miss significant opportunities overall. It is also important to realize this is not simply addressed by a service excellence effort; rather it takes broader intentional and purposeful action.
Libby Hoy, founder of PFCC Partners and the mother of three boys living with chronic illness, suggested, “I think organizations really need to push past [service] tactics to creating an environment where patients and families feel confident and comfortable asking questions and getting the information they need…When organizations are just so focused on service, on the ‘How I’m going to act on you,’ then they lose the opportunity to get that reciprocal information that could really benefit them.” Once again we hear the acknowledgement of the significant opportunity that exists to intentionally and effectively engage patients beyond just being passive recipients of care.
Considerations for Action
In exploring the opportunity of engaging the voices of patients and families, I asked our contributors for advice they had for healthcare leaders. The themes were clear and powerful. They included:
- Get out and find what people are saying, not just patients, but people on the front line. Decisions, strategies, and plans should not be made in a leadership vacuum.
- Reinforce and reinvigorate your organizational culture by recognizing those that positively engage and partner with patients. Create on-the-spot opportunities and formal programs to provide this acknowledgement.
- Round on your organization and, most importantly, your staff to reinforce positive behaviors, immediately address negative ones, and identify where silos or other issues impede the delivery of a singular and positive experience for patients and families.
- Ensure staff at all levels know your effort is not just another initiative, but by engaging patients and family members and ensuring partnership and voice, you are creating the strongest opportunities for safety, quality, and service, resulting in an excellent overall experience.
- Take the time to educate staff at all levels on your expectations, in behavior and action, for every encounter. Support this education not just with training, but also by capturing and sharing stories as a powerful medium to ensure sustained efforts.
What I found of significance in the advice our contributors offered was that it was not necessarily about what they personally needed, but rather what they saw as opportunities for healthcare organizations themselves. These ideas lead back to the heart of The Beryl Institute’s definition of patient experience itself: the sum of all interactions, shaped by an organization’s culture that influence patient perceptions across the continuum of care. The voices of these patients and family members were saying your culture, your people, their behaviors, and the interactions you create all do impact perceptions and, ultimately, experience.
Partnership Revisited
So what is the significance of what the patient and family members shared? What themes emerge from their generous and valuable contributions? A few summary considerations include:
- Acknowledge patients are not subjects in the healthcare process or “something” you should talk about or plan for in third person. They are partners in the healthcare experience.
- Recognize patients are not necessarily wired to actively engage in the healthcare process, due both to the complexity of healthcare and the nature of the system itself (that potentially diminishes the role of the patient in an unspoken hierarchy of expertise). You must ask, encourage, and act on the patient’s voice.
- Consider coordinating efforts to identify and incorporate patient perceptions into the overall planning of care.
These discussions only served to further reinforce that patients have one experience when they encounter what to healthcare providers might be distinguished separately as a quality, a safety, or a service effort. The opportunity is to find ways to integrate, coordinate, and reinforce your efforts to drive the overall experience and integrate what you know to be right, safe, and effective with the needs of the consumers of your care. One contributor to the paper offered, “All too often in healthcare, the conversation about what should happen to or with patients, is done by the people that are delivering, not by the people that are receiving.” The reality this represents and what was reinforced by the patient and family voices with whom I spoke is that if you don’t understand expectations and then actually make those explicit, you may already be on course to miss your target: fulfilling the needs of patients and families. In taking the time to listen with compassion and to establish productive partnerships, you create a space where true patient and family perceptions can be addressed and the overall experience positively impacted.
Barbara Lewis summed this up in a powerful way, offering, “Patient care needs to be a partnership and a collaboration. The hospital needs to set the tone and the framework for that collaboration. The collaboration first has to start among the staff members, the doctors, and the nurses, and then between and among the doctors, the nurses, the patients, and the family members; encouraging them—everyone—to speak up, and to speak their mind.”
The ability to listen in the moment and act on what is invited or shared may be one of the greatest gifts in healthcare. This partnership of listening represents the gift of dignity and respect patients and family members ultimately desire in the healthcare setting. Once they feel it, their experience—all that is remembered of their encounter with your organization—will be positive and strong. Doing this not for, but with patients, should leave your organization with a sense of greater purpose and well-deserved pride.
Jason Wolf is president of The Beryl Institute, the global community of practice and premier thought leader on improving the patient experience in healthcare. Through his leadership, the organization has grown to engage 15,000 members and guests in more than 40 countries. He is a passionate champion and recognized expert on organizational effectiveness, service excellence, and high performance in healthcare. Prior to joining the Institute, Wolf designed and led development and service strategies for more than 45 healthcare facilities as director of organization development for the Eastern Group of the Hospital Corporation of America (HCA). Wolf is the author of numerous articles and publications including two recent books on organization culture, change, and performance in healthcare: Organization Development in Healthcare: A Guide for Leaders and Organization Development in Healthcare: Conversations on Research and Strategies. He can be contacted at jason.wolf@theberylinstitute.org. You can also follow Wolf on Twitter @jasonawolf.