Abstract
I recently saw notice of a journal with which I was not familiar. SAGE, which publishes Health Environments Research & Design Journal (HERD), has an open access, peer-reviewed Journal of Patient Experience. Since my research area focuses mostly on critical care, I noticed the call for papers on “Patient’s Experience in the Intensive Care Unit” which is due December 31, 2021. That caused me to give some thought to the whole idea of patient experience.
Committed to Human-Centered Care
For the past 40 or more years, there has been much attention paid to the experience of patients. I can recall being profoundly influenced by Robin Orr, the original director of the Planetree organization, and her powerful case for putting the patient at the center of our thinking (Frampton & Charmel, 2009). This was at a time when most of healthcare was physician-centric. We soon recognized that we were treating more than the patient, and the mantra became family-centered care. This soon was replaced by human-centered care when we included attention to the staff who found themselves spending long hours every day in these environments. Nirit Pilosof, a Canadian-educated Israeli architect and researcher associated with UK’s Cambridge Judge Business School, suggests wide adoption of patient- or human-centered care has sometimes reduced the concept to a “buzzword” with little real impact.
Patient-centered or human-centered care gave us a new perspective on the experiences of those who needed medical treatment or hospitalization (Edgman-Levitan & Schoenbaum, 2021). Policy changes meant providing better and complete information to patients, along with giving them access to their own medical records. Shared decision-making between patients and clinicians was a major advancement, if controversial at the outset. Environmental changes included reducing the harsh, institutional character of many health settings by adding color, artwork, plants, comfortable furnishings, and softer materials where appropriate (Frampton, 2012). There was a recognition supported by research that the presence of family, friends, and persons offering support improved clinical outcomes (Uchino, 2004) so attention to space and amenities for the family became more common. We grounded our work in Roger Ulrich’s Theory of Supportive Design which proposed that design should attempt to reduce stress, which was known to exacerbate every clinical condition (Ulrich, 1997).
Intentionally Designing the Patient’s Experience
There is a new profession emerging and it has an influence in the world of healthcare. User experience designers, sometimes identified by the UX acronym, and more specialized patient experience designers, called XP or EXP professionals, provide consultation on problem identification, on how to improve the experience consumers have with organizations along with testing and measurement (A. Sargsyan, personal communication, October 13, 2021). They talk about intentional user experience and suggest there is a nuance to identifying and understanding your main and target users (A. Kircher, personal communication, October 12, 2021). As a new field, there is still a lack of solid research, but existence of the Journal of Patient Experience is a good sign that more may be coming. Scholars and practitioners need venues to publish their findings. Peter Jones, an experienced design research consultant on the faculty at the Ontario College of Art & Design University in Toronto, proposes innovations in healthcare consumer experience involving a patient-oriented perspective, development of greater patient agency, improving touchpoints of care, along with service design at the point-of-care (Jones, 2013).
Some of my graduate students, like Amy Kircher, a former HERD editorial assistant, have gone on to successful careers in experience design and they tell me their design and architectural problem-solving education is well suited to the role they play. Kircher reports that what she learned about evidence-based design, problem seeking, strategic thinking, environmental research, and dealing with complex systems in an architecture program has helped her throughout her design career and in UX design. She and others relate the process of digital experience design to the design of physical environments.
More and more healthcare organizations are focusing on patient experience. There are directors of patient experience at Kaiser Permanente, Ascension, the Mount Sinai Health System, the Cleveland Clinic and Mayo Clinic, the Veterans’ Administration, and too many more to name. Here in College Station, TX, our local CHI St. Joseph’s Hospital has a Director of Patient Experience with an MBA and CPXP credentials. Persons perform these roles in large or small public, private, government, and investor-owned organizations; they come from backgrounds in design, nursing, business, and hospital administration. I believe the wide adoption of this role represents something of a sea change in organizational accountability for healthcare.
Using a design process in the healthcare field is not unique to experience designers. Bon Ku, MD, from the Health Design Lab at Thomas Jefferson University, and Ellen Lupton, design curator at the Cooper Hewitt Museum have collaborated on a book that promotes design thinking as a way of creating products and services intended to contribute to better health (Ku & Lupton, 2020). They are interested in applying design methods to the unique challenges of medicine. Health design thinking is an open mindset rather than a rigid methodology. This emerging practice has been used to transform products, environments, workflows, and mission statements, and to bring new perspectives to medical professionals. Health care systems around the world employ design teams to improve patient care. (Ku & Lupton, 2020, p. 7)
What Constitutes Patient Experience?
I am reminded of the times when the design for health community debated concepts like “homelike” and critiqued projects influenced by hospitality design. We asked whose home might be the model or prototype? It caused many of us to think more deeply about the diversity of people who might use our buildings and find ways to be a bit more universal. We produced attractive, new designs and implemented innovative operational concepts. In whatever kind of environment patients may find themselves, memories of their experience are vivid. Family members carry long memories of what they and their loved ones experienced.
It would seem to be helpful to better understand what elements contribute to patient experience. I have imagined a few categories that might contribute to the aggregate experience of a patient and their family. Some seem more appropriate to a supportive design intervention than others.
Personal Experience
Each patient can have an encounter with pain, fear, loneliness, isolation, or other negative emotions that impact their highly personal perception of a lived experience. On the other hand, patients can also have experiences of relief, gratitude, comfort, renewal, happiness, or other positive emotions. What are the design or environmental features that impact these things?
Experiencing a Day in the Life
The lived experience of a patient includes their daily activities, including the routines of caregiving, toileting, food, entertainment, education, rest, interruptions, noise, and sleep. Any or all of these may impact the patient’s perception of their overall experience.
Medical Experience
Each patient of course has a medical experience that relates to their clinical outcome and a sense of curing or healing or the lack of something positive. This may not be the realm of design, but it is certainly an element of the patient’s experience. Len Berry, however, writes about how patients use environmental clues and cues to make judgments about the quality and professionalism of medical care they may not otherwise be able to evaluate (Berry, 2019; Berry et al., 2006). A clean, well-maintained building and professional appearance among the staff builds the patient’s confidence in the quality of their medical care.
Experience With Staff
Patient experience includes all their interactions with nurses, physicians, and other staff members. Were they treated abruptly and impersonally, or did they perceive authentic caring? The PPHEN instrument: Patient Perception of Hospital Experience with Nursing (Dozier et al. 2001) was developed to measure patient experience as it relates to nursing care.
Social Support and the Experience of Families
A patient’s experience includes the family and social support they receive while in the hospital. Research tells us that social support impacts clinical outcomes (Uchino, 2004). The quality of the social support experience will vary based on the access provided for visitors, along with a sense of openness and welcome. Amenities for families can include easy access to information, counseling, accommodations of overnight stays, access to toilets and showers, and food, drink, coffee, and snacks.
Spiritual and Philosophical Experience
A hospital episode sometimes causes one to recognize their own mortality and to face the implications of lifestyle and personal behavior. An aspect of patient experience can include powerful philosophical, spiritual, or existential revelations. The role of counselors, rabbis, chaplains, priests, mullahs, or spiritual leaders can be important for patients and their families.
Digital Experiences
Today, so much of what we experience around patient care is in the digital world. Scheduling appointments, digital waiting rooms, and telehealth doctor visits, getting lab results, patient records, taking notes during visits, insurance coverage and billing, and numerous other health-related experiences take place online. These episodes either improve the patient experience or harm it (A. Sargsyan, personal communication, October 13, 2021). Experience designer Anahid Sargsyan, another former student, points out that digital experiences more strictly adhere to the legal requirements of patient care as everything is recorded and discoverable.
Experience With Personal Resources
In the United States, individuals having a medical episode may unfortunately experience serious financial problems. Patients can become depressed by the situation; they may have lost a job, become handicapped in some way, and might have to look forward to a dramatically altered future. Patient experience and the loss of personal control can lead to depletion of energy and a change in their mental health status.
At what point does attention to esthetic design and comfort overcome the absolutely compulsory requirement for high-quality medical and technical performance? At what point is standardization too simplistic and ineffective for varied usage, or becomes stale and outdated, and at what point does design for individual differences or preferences become too unique and inaccessible to the broader population being served?
Does dependence on digital documentation and record-keeping cause inefficiency or diminished clinical performance? Was design for improved ambiance a problem for efficiency and clinical performance? I don’t believe it was an either/or choice but I respect the opinions of design practitioners and clinicians from other parts of the world who felt that North America had gone too far down the path of making pretty patient rooms in extravagant buildings featuring hotel-like lobbies. The counterargument reminds us that the capital cost of a facility is minor in comparison to the ongoing personnel and materiel cost, and the difference between a plain design and an attractive one is a very small part of the total expenditure. More can be gained by efficient designs that save labor.
COVID Has Changed Everyone’s Experience
The sudden emergence of COVID-19 required an extraordinary and rapid response from hospitals and their staff. The massive impact on the healthcare system cannot be overstated. COVID care completely changed the patient and family experience just as it changed the experience of clinicians and hospital staff and revealed system problems. ICU nurses and clinical staff are experiencing an “unbelievable level of burnout” which is “shocking and heartbreaking” as they admirably give the best patient care they can (A. Kircher, personal communication, October 12, 2021).
The volume of patients overwhelmed some institutions and surge capacity became an immediate priority for many. Nonclinical space often had to be quickly converted to care for patients with newly installed medical gasses and air supply filtration. The absence of negative pressure isolation rooms (only 10% of beds in the United States) meant rapid room conversions to accommodate 100% nonrecirculated air and immediate exhaust to the outside. Few units were designed to accommodate space for donning and doffing personal protective equipment (PPE), nor to store large quantities of gear where it was most needed. To reduce the need to enter patient rooms, some facilities created ports in the corridor wall, so umbilicals and extensions allowed them to manage monitors and pumps from the hallway.
The COVID patient experience is frequently horrifying and impersonal. It rarely provides intimate connections or humanistic contact in spite of valiant attempts by the caring staff to make it less negative. Very sick and often dying patients are frequently isolated on ventilators, unable to talk, away from any family contact, or from the supportive presence of those they love. Terrified patients are confronted by staff fully garbed in protective clothing, goggles, and masks, looking like creatures from outer space and unlike caring nurses or doctors. This could never be imagined as patient- or human-centered care.
We quickly abandoned esthetics and the niceties of human-centered care in the face of the pandemic’s deadly threat. Swedish architect Stefan Lundin reminded me of the saying, “necessity knows no law,” as a recognition that we do what we must to save lives and ignore everything that isn’t critically required (S. Lundin, personal communication, October 15, 2021). We find these impersonal and starkly institutional adaptations to be acceptable in the moment, and yet hope for a return to the humanistic principles of supportive design when the worst has passed.
What Have We Learned?
The stark reality of COVID care is in complete contrast to the desired type of personal, humanistic, and highly individualized care most of us have come to prefer. The COVID response, if not an entirely different design paradigm, requires something completely in contrast to the types of facilities most of us have been designing in recent years.
We have transitioned to outpatient care in a huge way over the past 50 or more years. People who were inpatients on acute nursing units are now most often being treated and going home. People who might have been in intensive care then are now the ones receiving significant levels of care on the acute units. Nursing long ago stopped being about providing food and lengthy rest with clean sheets and a few medications. The patients who would not have survived before are now the occupants of contemporary critical care units with a real chance to survive.
One has to wonder if we are seeing another shift in which higher percentages of negative pressure isolation will be required while the acuity at each level of care will increase as more and more care leaves the hospital via outpatient ambulatory care or care at home. Physicians are trending toward digital visits using iPhone photos to reduce in-person visits and more care is being provided via video chats, e-mail, text messages, and phone calls (A. Sargsyan, personal communication, October 13, 2021). It is possible to predict that the future will be more digitally centered and dependent. Will the remaining high acuity hospital care require a higher percentage of ICU beds or need to offer only acuity adaptable rooms capable of rapid conversion to handle critical care?
What will we be doing with future designs for hospitalized patients? We have learned of the need for separation of suspected infection with a “fever” entry and waiting room at the emergency department. We have learned to separate traffic flow for infectious units and the movement of infectious patients. We know how to design for rapid conversion of space and units in the face of outbreaks and epidemic care. We suspect that there will be a role for artificial intelligence (AI) to monitor and predict conditions leading to infectious outbreaks.
Lessons come from around the world. Sweden teaches us to assume everyone is infected and isolate them until testing can prove otherwise. Canada, which recalls their difficult SARS experience, is introducing designs for entire isolation units with 100% HEPA filtered outside air containing designated spaces for donning and doffing PPE. Proposals from the Netherlands include planning for a dual capability that will allow an infected population to be treated on a parallel track independent of the noninfected patient population. This can include duplicate facilities for diagnosis and treatment or the frequent use of portable technologies.
Looking Forward: Designing for an Evolving Patient Experience
What will the patient experience be like in the new, better-prepared facilities? I believe we will continue to be committed to human-centered care and will strive for patient empowerment as better-informed patients as co-decision makers become further involved in directing their own care in a safe setting. COVID has shown us how easily we can have the model of human-centered care snatched away. We will strive for the best it has to offer in settings intended to be less institutional and to reduce stress and fear among patients and their families. There will be some instances where the new emphasis on safety and infection prevention may challenge the optimum human-centered model, and we will resolve these issues wherever they are found.
Attention to recognizing and improving patient and family experience is a good thing that will contribute to helping health systems better serve their communities. In addition to patient experience design professionals, there will be meaningful new roles and opportunities for administrators, clinicians, and design consultants who will be creating a caring environment that is safe and clinically effective. There will also be roles for patients that will impact their experience. Patients in a variety of settings may find themselves using digital communication, telehealth, data sharing, wearable diagnostic devices, and perhaps even artificial intelligence.
We know what has to be done if we commit ourselves and our institutions to prepare for the next crisis. We must be better positioned to deal with outbreaks and epidemics while preserving the emphasis on a positive, humanistic patient, family, and staff experience. It is something we must do for the quality of life experienced by patients and for our own good.