Experience-Based Co-Design and the Human Experience in Healthcare

Experience-Based Co-Design and the Human Experience in Healthcare

Healthcare is all about the patient. Our patients are the reason we come to work each day. They compel us to do more, to do better, to make a difference. Only we’re beginning to realize that we’ve been getting it wrong.

The call to move away from a paternalistic approach to healthcare and toward a partnership model came in 2001 when the IOM called upon clinicians to engage patients and families by “ensuring patient preferences, needs, and values guide all clinical decisions”. No one would disagree that this is a much-needed change and the right thing to do.

Despite the national focus on replacing the paternalistic approach to patient care with a partnership approach and widening the lens to look beyond clinical outcomes to the broader experience of receiving care, we still find that we’re getting it wrong much of the time. Patients feel like cogs in a wheel, disempowered, dissatisfied, dehumanized. It turns out that many healthcare practitioners who entered the field and expected to derive a sense of fulfillment from their work feel much the same way. In a 2016 survey conducted by the Physicians Foundation, 54% of physicians indicated negative morale and are choosing to get out of patient care all together, while a 2017 Career Builder survey found that 70% of nurses are feeling symptoms of burnout. One has to ask: where are we missing the mark?

Healthcare is a unique environment because it exposes the vulnerability of patients and families and at the same time asks the professionals working in that environment to cover up their vulnerability. And yet, in the “environment of care” our experiences as human beings are interconnected. The experience of healthcare professionals directly impacts the patient experience. Frontline staff manage heavy patient care loads, have their decision-making power reduced by restrictive organizational policies, and feel powerless to address the source of patient and family complaints.

The ultimate goal of providing safe, high-quality care and the experience our patients and families deserve is dependent upon our willingness to address the needs and challenges of those who deliver the care. Thankfully, in recognition of the fact that healthcare is an interplay of human relationships and interactions, the broader definition of “patient experience” is evolving to include staff & provider engagement.

Despite this evolved approach to examine the human experience of healthcare, we still view professionals and patients as standing on opposite sides of the fence. We assume that because they’re viewing the experience through different lenses, providers and patients won’t agree on where we have opportunities to improve. Patients don’t understand the payer and regulatory challenges associated with delivering care and providers don’t understand what it’s like to be regarded as a patient, rather than a person. So how can organizations effectively address experience challenges for the people delivering the care and the people receiving it?

Experience-Based Co-Design (EBCD) is a partnership-based improvement model that connects patients and staff with the emotions associated with their experience through storytelling. Working with emotions is key because it clearly illustrates the need for change and motivates staff to make and sustain meaningful improvements. EBCD creates space for the shared vulnerability of patients, families and staff, illustrating the benefit of true partnership in a very tangible way.

Unlike other models of patient-family partnership, EBCD engages patients and families throughout entire continuum, from identifying opportunities for improvement, to developing, testing and implementing solutions. In this way, it goes much farther toward breaking down the barriers and adversarial relationships that hinder partnership.

The process initially separates staff and patients/families into two groups to enable them to speak freely and honestly about their experiences working in and receiving care in a specific clinical area. Each group identifies priority areas for improvement based on emotional “pain points”. Then the staff and patient/family groups come together to agree on shared priorities and to form co-design groups that will design improvement projects for these priority areas.

In the EBCD projects I’ve facilitated, the process has clearly illustrated that the experience of healthcare staff is intertwined in the patient experience, and that in fact, many of the same conditions that patients identify as detrimental to receiving care are also identified by staff as challenges to delivering care. By working together in this way, staff and community members break down the barriers inherent in the “provider” and “patient” roles and can more clearly see how their perspectives overlap in many ways.

EBCD transforms shared vulnerability into collective strength to make positive change. Now that’s empowering.

Taking the Long View of Patient Experience

Taking the Long View of Patient Experience

If you’ve participated in the patient experience conversations over the last decade, you know that much of the focus is on what happens inside hospitals (and on hospital grounds) and to a lesser extent, in outpatient clinics and doctors’ offices. And while The Beryl Institute’s definition of the concept recognizes that the patient experience is shaped by a diverse group of professionals and occurs “across the continuum of care”, most of the operational focus around patient experience is on what happens within the walls of the hospital. My own patient journey, as well as my work as an occupational therapist helping patients to regain independence after illness, has taught me that it’s what happens after a patient leaves the hospital that is perhaps the most challenging part of the continuum of experience.

My first significant patient experience occurred when I suffered sudden cardiac arrest in 2013. I was unconscious during the acute phase of my illness, so my perspective is of the long recovery process, which I view in two separate phases. The first phase took place in the hospital where a team of healthcare professionals cared for me around the clock. There were people who kindly addressed my questions, even the ones I asked no less than four times; who asked how I was doing and seemed to actually want to know the answer to the question; who knew my husband by name and greeted him as they changed the bed linens and emptied the trash; who collected my meal card and patiently listened to my complaints about how a pureed dinner roll tastes nothing like real bread. There was my clinical team to whom my husband and I felt enormous gratitude for saving my life. My physicians thoroughly explained the plan to insert an implantable cardioverter defibrillator (the only treatment option for sudden cardiac arrest), a device that constantly monitors my heart rate and will deliver an electric shock if ventricular defibrillation is detected. I remember feeling very safe and secure—all of my concerns alleviated, my questions answered (or at least the ones my post-coma brain could generate at the time). I was discharged home the day after my ICD surgery.

All of that care and attention came to an abrupt end with the second phase of my recovery, which began once I arrived home from the hospital. The flurry of activity and round-the-clock care stopped, my husband went back to work where he admits he spent more time worrying about my wellbeing than he did on actual work tasks. Soon after I arrived home, I began conversations with my own employer about short-term disability, coverage for my job responsibilities, and all sorts of other details I felt unprepared to address. My friends were raising children, planning vacations, and going after promotions at work. I was fearful of going to the grocery store, afraid that I might collapse to the floor in the cereal aisle while this foreign device in my chest delivered a series of electric shocks.

In that transition time between experiencing a catastrophic illness and attempting a return to normalcy, my husband and I were left on our own to process our experience and its impact on our lives going forward. That, to me, was far more challenging than having my blood pressure taken every hour, waking from a deep sleep for a needle stick, or understanding a 10-page after visit summary.

It was only after I began to adjust to this new reality as a cardiac patient that feelings of resentment that began to overshadow my sense of gratitude for the life-saving care I received. Rather than choosing the best treatment option for myself, I began to feel that I had given consent to the treatment plan my physicians wanted for me. Note there is a significant difference in designing a treatment plan for the patient, and designing that same treatment plan with the patient. Granted, in my case, the only other option would’ve been to have no intervention at all, a hard option to consider for a thirty-something-year-old woman who is at risk of experiencing another arrest in the future. As someone who likes to feel in control of her own health and wellness, however, having the opportunity to discuss this admittedly less desirable option with my team would’ve made all the difference to me as I navigated the path of recovery.

My own experience taught me that when the proverbial dust settles, the “what now?” question remains for our patients. This is an important facet of the patient experience, and it is directly impacted by what happens (or what doesn’t happen) during the patient’s time in the hospital. The extra five minutes that the physician or nurse spends asking about a patient’s values, hopes, and fears can mean the difference between feeling like a number and feeling like a person. The compassionate actions of the environmental services and dietary staff, the rehabilitation and nursing teams all create impressions and emotions that patients and families take with them into their recovery. For the patient, these actions can make the difference between feeling powerless to manage a chronic illness or to cope with an unexpected health scare and moving forward with new perspective and determination.

This is the “long view” of patient experience—the awareness that our actions as healthcare professionals have far-reaching impact. We become part of the patient’s story. My patient story is about the pain of losing control of my wellness and my decision-making power in the midst of immense gratitude for receiving miraculous, life-saving care from dedicated professionals. It is also about the care and compassion that my care team showed to me and the way that fueled my desire to derive meaning from my experience and to make a contribution in this field. I am a patient. However, a patient is not who I am.

Taking the “long view” of patient experience work helps us to realize the true impact of “the little things”, and it may just help each of us to reach beyond an organizational commitment to excellence and toward an individual commitment to doing good.




In the healthcare world, we are on a mission. Actually, we are on many missions, and it often seems that we find ourselves trying to find the way forward in the midst of a dizzying rate of change. Although we often point to new developments in technology as the drivers of change, much of this evolution is more philosophical in nature. In particular, the move toward more patient-centered care is, fundamentally, a return to the very heart of our mission in healthcare—to help our patients.

In its publication, Crossing the Quality Chasm: A New Health System for the 21st Century, the Institute of Medicine called upon us to provide “care that is respectful of, and responsive to, individual patient preferences, needs, and values; and ensuring that patient values guide all clinical decisions”. In response to that call, there has been a massive response, with organizations like the Institute for Healthcare Improvement and CMS issuing guides and publications and hospitals establishing whole departments devoted to the cause. In the midst of all of this movement, it often seems that we are lacking consensus on exactly WHERE we are moving to. While it’s clear that we should strive to put the patient at the center of everything we do, we are left to sort through seemingly analogous concepts including “patient and family engagement” (PFE), “patient- and family-centered care” (PFCC), and “patient experience” (PX) and to decide how best to operationalize these approaches in our own organizations. Taken individually, each of these philosophies is comprehensive, and yet, their definitions haven’t been wholly agreed upon. And how do all of these concepts relate to each other? Is the best approach to stick with the approach best fits for our organization’s culture and strategic vision?

Let’s look first at the idea of PFE. One of the more widely recognized definitions from Ann Coulter focuses on a cooperative relationship between patients and providers that enables them to improve health and healthcare at both the individual and collective levels. On the individual level, if we want our patients and families to successfully manage their health conditions, there must be effort on the part of the provider and importantly, on the part of the patient. This idea extends beyond the concept of “compliance” to sharing information, participating in decision-making, and ultimately, co-designing treatment plans. It’s no surprise that this approach leads to reduced complication rates and better “adherence” (in the PFE world, that term is much more agreeable than “compliance”). After all, when patients are encouraged to participate in a conversation about what treatment plan works best for them, they feel much more invested in seeing it through.

On a broader scale, utilizing a patient and family engagement approach can help us to ensure that we develop policies and programs that are relevant and necessary for the people we serve. Essentially, we are asking the very people who consume our healthcare services to help us to make them better. This is something that private industry has been doing for a long time. Think of breakfast cereal manufacturers: before marketing a new cereal or changing an existing recipe, they convene a focus group of consumers to test it first. Our cereal manufacturer certainly understands the peril in marketing a kids’ cereal that kids won’t actually eat. In the healthcare world, our equivalent of cereal consumers are patient and family partners who bring the patient/family voice to internal committees and task forces and who sit on patient/family advisory councils. They advise us on everything from brochures to building design.

“Patient- and family-centered care” as described by the Institute for Patient- and Family-Centered Care (IPFCC) calls us to “redefine the relationships in healthcare” to encourage “mutually beneficial partnerships among healthcare providers, patients and families”. Care that is truly patient- and family-centered recognizes the role of families in our overall wellbeing and includes emotional, social, and developmental support. Many of the ideas embraced in a PFCC approach overlap with PFE—information-sharing and including patients and families not only in treatment conversations, but also in organizational policy and operational discussions. PFCC places a particular emphasis on the importance of including families in care for patients of all ages. Open family presence policy is one PFCC best practice, recognizing that patients fare best when they are in the company of loved ones. Story-telling is another tool in the PFCC toolbox. Giving patients and healthcare providers a venue to share their personal stories is a powerful way to help providers reconnect to purpose and even to combat burnout.

“Patient experience”, according to The Beryl Institute defines as “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care”. It includes everything from encounters with physicians and environmental services staff to noise levels on inpatient units to the ease of the registration process. Also, incorporated in the concept of PX is engaging patients in their own care and tailoring that care to fit each person’s individual needs. PX also includes discussion about patient expectations. Did we communicate clearly and in a way the patient could understand? Were those expectations met? As the patient experience movement is still relatively new, there is still a great deal of discussion regarding the scope of the definition. So, while there is a need for continued exploration in this field, it is certain that PX will remain a top priority, not just for healthcare organizations, but for also patients. In 2015, the Beryl Institute surveyed healthcare consumers and found that over 90% of respondents identified the patient experience as extremely important in their healthcare decision-making.

So, we find ourselves back again, exploring the themes that PFCC, PFE, and PX share in common: communication, information-sharing, and partnership. While the conversations continue and we explore ways to not only define, but to operationalize these concepts, I find it helpful to think about the relationship this way: