Design for Care: Innovating Healthcare Experience

FOREWORD

In 2012, my wife and I were partners on a cancer journey. She was diagnosed with stage IIIA breast cancer in December 2011, and the cycles of chemotherapy, surgery, and radiation therapy filled the first seven months of 2012. As a clinician, I reviewed every order, every note, and every plan in her Beth Israel Deaconess online medical record. As a patient, she viewed everything written about her in her Beth Israel Deaconess PatientSite personal health record. I cannot imagine how care coordination, shared decision making, and communication would have been possible without ubiquitous patient–provider access to all the data, knowledge, and wisdom related to her care.

In Design for Care, Peter Jones outlines the critical role of design in the wellness care of the future, ensuring that every provider and patient is empowered with the services and tools they need for healthcare quality, safety, and efficiency. His thoughtful analysis includes all the core concepts that are driving the US healthcare IT stimulus—policies and technologies that engage the patient, eliminate disparities, protect privacy, and prevent avoidable harm.

When I mentioned that my wife’s care required universal access to data, knowledge, and wisdom, what did I mean? Data includes the simple facts about her care—an appointment is made, a medication is given, a lab test has a result. Information is the interpretation of her data in a manner that is relevant to her care—her hematocrit at baseline is 39, and after chemotherapy it is 30. Her medications have caused side effects that may outweigh the benefits of the drug. Wisdom is applying decision support rules to her information that optimizes her care. Because her tumor is estrogen positive, progesterone positive, and HER2 negative, the best therapy is Cytoxan/Adriamycin/Taxol. Her accumulated radiation dose from all the mammograms, CT scans, and other studies is concerning, and thus ultrasound should be used when possible.

We clearly need better ways to move between data and information to knowledge and wisdom in today’s complex healthcare world. This book illustrates these points and emphasizes the need for patients and providers to embrace a wise integration of technology into healthcare service.

Meaningful use and care improvements through universal adoption of electronic tools is just one of the major trends in the era of healthcare reform. Patient-centered medical homes, accountable care organizations, and population health are the new buzzwords. We need to rethink and actually design the new models of service, institutional practice, and patient engagement that ensure these new institutions become innovative alternatives to the care model, and don’t simply replicate business as usual. The new concept is that care is no longer episodic, but continuous. Patients are engaged in their daily lives, and the emphasis is no longer on the treatment of illness but the preservation of wellness, maximizing functional status and care according to the preferences of the patient.

Peter Jones examines the kinds of innovations that are moving care away from academic health centers and into the community and homes. This trend is essential—healthcare in the United States consumes 17% of the gross domestic product. It is a poor value, with significant cost and less than stellar outcomes. To bend the cost curve and create high-value care, it is wise to follow the recommendations outlined in this book. Embrace technology, but design it well and consider its future trajectory and how it affects safety and interaction with patients. Engage the patient and innovate in ways that focus on longitudinal wellness rather than episodic encounters for illness.

I am confident you will find this book a helpful road map to guide your own journey to improve health and healthcare.

—John Halamka, MD

Chief Information Officer, Beth Israel Deaconess Medical Center, Boston

INTRODUCTION

Care, and healthcare, is about taking care of humanity. Health is personal and universal—it may be the one value everyone cares about. Healthcare is the most hands-on of professions and services, and yet is extremely technical. As the industry intensifies the adoption of digital and electronic technologies, deeply informed design of services and systems becomes a pressing and critical need. At the same time, healthcare design does not yet fit into the conventional clinical organization, and institutional practices have not established meaningful positions for design. However, considering the increasing role of technology, the risk of errors induced by poor design, and the complexity of healthcare itself, designers from specialized disciplines should play critical roles in all technology decisions.

Healthcare in the United States is a mess. Technically, a mess is a complex set of problems with inextricable interdependencies. The overall system of healthcare—from services to payment to policy—has grown so complicated that a redesign of its components would not change the system substantially. New design thinking is called for, yet where do we start? Designers have no access to the system levers, and most of our work today is aimed at making the components run better and safer.

Healthcare has always organized itself around the patient encounter. Each human being with a healthcare need must be engaged in person and with respect to his or her unique biological and environmental circumstances. Healthcare services are designed to manage the flow of people from need to outcome, generally one at a time, according to the encounter formula. Services are aggregated into big box clinical solutions—hospitals and clinics—that serve as our care malls for full-service healthcare. Big box care is aggregated at the system level to regional and payer networks.

Healthcare is changing rapidly, attended by the increasing complexity related to its information glut. Consumer access to highly credible health websites has irreversibly altered the traditional equation, changing once-passive patients into stakeholders in the healthcare business. Their awareness of and access to health information challenges the hegemony of institutional practice. But innovations in healthcare and open information are also balanced by the inherent risks of institutional care, its systemic risk aversion, and its regulatory environment. As healthcare services undergo constant change, do we know how the numerous information systems are cooperating, and how different views of patient data are shared? How will new information infrastructures, systems, and configurations affect practice? How will changes in practice affect patients?

One intention of this book is to enable better communication, understanding, and knowledge transfer between healthcare fields and work experiences. The chapters are organized to reflect the human health experience and to discuss issues at the points of interaction where people seek and receive healthcare.

Designers (in general) perform systematic problem solving to formulate better ways for humans to interact with technology and services. Many designers work on systemic big box problems such as process workflow, information displays, and wayfinding; or behind the scenes on medical devices, health IT, or Web interfaces. As in the field itself, few designers are able to contribute in more than one healthcare sector. Therefore, better understanding between sectors will enable us to design better end-to-end processes and whole systems. This book aims to create awareness across these segments and sectors by indexing representative issues and powerful methods from successful applications.

Design, in all its disciplines and methods, is finally emerging in new and influential roles in all types of healthcare services. Medicine is not, in practice, an online and digital field, but the rapid development of digital technologies in care delivery and education is drawing new designers into all healthcare sectors, from consumer websites to clinic design. Design for Care speaks to these designers and health professionals about how, where, and why their fields connect at the many points of care and service.

Designing for Care Experiences

Care is a powerful value, one we all take seriously. When a friend announces that he or she is taking time off from work to take care of a spouse or other family member, we understand the empathic response to a life-changing situation that takes priority over other values. Care is not just a response in the present. We project concern and hope into a shared future, and hold both memory and expectation for the cared for. Caring extends over time, unlike the immediate empathy needed to understand user experience, for example.

Yet caring is not just temporal, based on need, it is considered an enduring and authentic characteristic of a person. People take care of the others in their lives. Direct design implications are revealed in this observation. There may not always be a single user for health information and services. The single-user persona may need to be updated to a family scenario and the best-friend search use case. As some informatics researchers are now pointing out, the health-seeking experience is a multiparticipant, multiuser circle of care. It is often familial, and inherently and intimately social.

The verb care has acquired different meanings in different health and caring professions, and each profession related to health and human development may subscribe to a different definition and view of care. When settling these differences in meaning and not just discourse, the problem becomes ontological, a question of the reality of caring. This is not simply a conversion of meanings from one field to another. The very meaning of care and caring differs between providers (health practitioners) and between providers and recipients (patients). Design has not yet taken a clear stand in the matter of care. Perhaps we recognize that we cannot own the core when we ourselves still live and work at the periphery.

Philosopher Milton Mayeroff defined caring as acting on empathy, as being able to understand another’s world as if you were that person. Caring requires knowing, trust, patience, humility, honesty, and the primacy of life’s rhythms. According to Mayeroff, for caring to take place, there must also be developmental change of the other as a result of what I do; I must actually help the other grow.¹

How the Design Industry Must Change

Design has never been a serious contender for service as a caring profession. Across the full range of design fields, from communications and visual design to fashion and product design, designers are recruited to enhance campaigns that oppose values of caring. The recent vogue of design thinking does nothing to alter the technological affinity of the design professions. Design, more than the sciences even, has been steered toward a values-neutral practice of creative product and service development. There are no core ethics of design thinking, no inherent barriers of duty or conscience that keep designers from switching from healthcare content to beverage industry clients. Design thinking’s crucial test is not merely surviving the merger of design and business with its soul intact, but in transforming organizational practices by continually repositioning real human beings in the center of design and service management decisions.

Learning from empathy is a first step toward caring, by allowing us to understand how other people experience the situations we are committed to improving. Given the interest in emotional design and empathic research methods in recent years, this step may not be in doubt. Responding as professionals to the call of caring marks the current bright line between the caring professions and supporting disciplines, such as design, IT, and human research, that are not called to patient care.

The call to care suggests a possible primary design position. Caring confronts us directly with a question of human valuing that we—designers and health professionals—may believe we are already fulfilling in some way. As with all values, the way it is understood can and will differ significantly between people.

We might start from the assumption that, as designers, we do not know (yet) how the values of care are lived and acted upon. We must interpret without (yet) being expert. Design for Care presents scenarios for designers to consider the human and social value of caring, the various ways care shows up in health seeking and health making, and the systemic role of care.

Finding Your Place in the Story

Healthcare is a massively complex system that deals with at least two irreducible sources of complexity: the institutional (distributed provider systems and hospitals) and the personal (the biological and social setting of the human body). Furthermore, these realms cannot be isolated, because the purpose of the institution is to serve individuals. An infinite variety of possible problems arise in the relationships between these two spheres of purposeful behavior. The opportunities for design to have an impact are everywhere, from effective comprehension of materials and wayfinding to improving education and information resources. Healthcare systems provide designers a constant, endless challenge in helping clinicians and patients navigate complex situations. Where is your place in the larger story?

Design (of all disciplines) is not yet showing its impact in health services. For the most part, designers remain on the sidelines in institutions and practice, unsure of where and how to step in to make a difference. Compounding this position is the difficulty that designers are often not given the latitude to practice creatively and meaningfully in healthcare institutions. The medical and institutional care traditions do not offer a ready berth for design, and our traditional positions have little systemic impact if employed without strategic intent. Until we prove to be valuable contributing members of the care team, we risk being seen as specialists and even marginal players in the story of care.

User experience won over every other application field, after a decade or more of commitment to business and IT. But change and innovation happen differently in healthcare than in other sectors—the risks are higher, the funding is regulated, and the users are not paying (or complaining) directly. IT is not the front line of patient care. If we are not working together with a systemic strategy, we may be contributing to the fragmentation of the field by optimizing narrow bands of practice that sustain old habits. We have no way of knowing without reaching agreement on a common design language that aligns the levels of care, the organization, and its system.

Designing for care has several meanings. Each chapter in this book focuses on a different aspect of human-centered design for care practice, identifying design approaches for the activity. A critical opportunity for designers is to transform the value available at the front lines of healthcare practice. Healthcare is changing rapidly, dramatically, and somewhat chaotically, as any change pushes ripple effects through the complex system. Healthcare reform, creating better care services around the patient experience, and humanizing IT are opportunities for design to contribute as a field.

PART I

Rethinking Care and Its Consumers

The rapid diffusion of hundreds of Web resources for health purposes has created a gap between information quality and user expectations. Consumers can now pursue their own research into health issues by searching the vast collections of consumer-oriented health information on the Web. They cannot be expected to understand the complexity of health issues, but do expect health information to be truthful. Yet more information does not yield better information. In fact, quite the opposite may be true. Part I focuses on the health-seeking activities of the healthcare consumer.

Health-Seeking Experiences

A person’s health seeking is a continuous process of taking steps toward better health—before, during, and after any type of encounter with traditional healthcare service. Health seeking, as with other human motivations such as pleasure seeking or status seeking, represents an individual journey, in this case toward relatively better health. For a very healthy person, the ideal of perfect fitness may be an authentic health-seeking journey. For a cancer sufferer, relative health may be a matter of surviving treatment and fighting for gains in remission. These are health-seeking behaviors with quite different personal struggles, achievements, care needs, and support requirements. Seeking health covers a set of fundamental human needs. Every person is a health seeker in their own way, even if not a patient or a fitness buff.

A person’s progress in health seeking is measured by points of feedback sensed from their everyday lives and received from professionals. People with chronic health concerns such as diabetes need continuous feedback. Those in normal health may find health feedback only marginally helpful. (For example, I may measure my workout progress, but I weigh myself on a scale maybe only twice a year.)

People also have different timeframes of health feedback. Think of the health-seeking journey as occurring over a lifetime, a continuity that proceeds through youth, adulthood, and older age. The individual and his or her immediate circle of care (spouse or partner, family, friends) are co–health seekers in many ways (though never co-patients). Everyone travels this journey together with parents, children, friends. The health journey includes a lifetime of other encounters and experiences that can enhance responsible healthy behaviors.

Yet healthcare providers have little insight into the continuous health-seeking journey. Although doctors may see dozens of individual cases on any given day, they have little time and usually no formal payment mechanism to follow an individual’s health journey after a professional medical encounter. Their brief touchpoint is but one opportunity for improving an individual’s health among dozens in a given day. There are certainly different types of practices, and some do track and manage longitudinal health outcomes. Yet an individual’s health seeking is his or her own journey.

For more than a century, Western healthcare has treated people as patients, as passengers in a complicated and mysterious train on rails governed by seemingly unknowable biological forces. Any degree of pathology is relative to a normal (healthy) standard and to a person’s own experience, which may be unknowably limited and limiting. The normal condition is one of relatively balanced health in a constant motion toward homeostasis. When facing conditions that require medical intervention, people are motivated to seek health as an end in itself, as well as supporting all other goals in life.

Clinicians might find the current mandate to improve the patient experience as the perfect entry point to engage design practices as full partners in providing better care. Designers have the advantage of not being doctors—they are not professionally bound to the same legal responsibility to treat people only as patients, subject to clinical intervention. By repositioning the individual health seeker as a deciding and knowing agent of his or her own experience, health services can be designed to facilitate a whole-person approach to health. Improving patient experiences is the just the first step in a cultural and historical shift. A person is a patient for a limited period, but the experience of seeking health is a continuous process throughout life. Care providers and resources can help restore natural and supported functions of life.

Health seeking is not just a journey to normal because there is no final state of health. People live with multiple conditions of relative health in a balancing system. Measures and indicators of healthy are not optimized; they are better or worse compared to an individual’s own baselines. People may lose weight by dieting but not improve cholesterol levels; they may recover from a viral infection but have a cough for weeks. No health measures are static, and the numbers of good measures are not as objectively healthy as people might think.

Health journeys are self-educating—people evolve as they learn in stages of struggle, understanding, acceptance, and self-management. Health seeking is an evolutionary act of self-discovery, of sustainable improvements of behavior and experience that claim a personal stake in one’s present satisfaction and future thriving.

The Health Seeker in Context

Beginning in Chapter 2, each chapter advances the scenario of a persona character, Elena, as she navigates complex health issues and pursues health outcomes over a series of setbacks and healthcare encounters. Her story serves as a baseline narrative to observe human responses to events, touchpoints, and likely decisions for care services. This health-seeking journey is loosely aligned with each chapter’s content.

FIGURE I.1

A health seeker’s journey.

Elena’s scenario is not unlike a service journey map, except from the perspective of the health seeker, whose shifts in role and identity are based on health condition and goals. The journey map is based on a typical method for portraying the navigation of health seeking and clinical encounters (Figure I.1). Notice that over the entire span of roughly two years, significant health events happen in brief intervals of two months or less, with significant impact on future health and life outcomes.

Physiological measures indicating relative health are not shown on this timeline, but are suggested in other contexts to indicate correspondences between measures, acute incidents, and recovery. Design goals for the health seeker in this journey view might include:

• Connecting Elena to her immediate family to support her caregiver role (through electronic media, printed artifacts such as notes and reminders, and multisensory media).

• Giving her direct support to inform and manage her family’s health needs, and connecting her with any services for which she has regular touchpoints.

• Providing her with emotional support as a caregiver to help sustain her motivation and keep track of health progress.

• Enabling her to easily update and track her interactions with clinical services and healthcare systems.

Part I, with its focus on consumer contexts, describes Elena’s personal sphere as she seeks information, support, and resources from her immediate circle of family and community to meet her health goals. Part II describes her choices and outcomes experienced as a healthcare patient, and Part III shows her as a participant in the healthcare system.

CHAPTER 1

Design as Caregiving

Can Healthcare Innovate Itself?

Whether you choose a story from your own life experience or from that of a friend or family member, or just Google healthcare horror stories, the problems in healthcare today are clear and all too common. Urban emergency rooms are overflowing, medical devices have misleading interfaces that lead to errors, doctors order too many expensive and unnecessary tests, and medical records are confusing and unreadable. Private health insurance is complex, expensive, and fragmented, sometimes resulting in crippling financial difficulties. Pharmaceutical wonder drugs are pulled off the market after a few years as emerging harmful side effects show up. Healthcare has optimized every function in the system, but the system grows more complex as these functions overlap and compete. As Harvard management professor Rosabeth Moss Kanter recently wrote,

Supposedly, everyone working in health care wants the same thing: to help people get and stay healthy. . . . The problem is that everyone can have a different view of the meaning of getting and staying healthy. Lack of consensus among players in a complex system is one of the biggest barriers to innovation. One subgroup’s innovation is another subgroup’s loss of control.¹

Because healthcare problems are so complicated and messy, they cannot easily be untangled once they appear. Mike McCallister, CEO of insurance provider Humana, described the US healthcare sector as a gigantic mix of varied players that is broken, but can be fixed. We don’t actually have a healthcare system. We have a lot of different systems that are glued together.² Alex Jadad, founder of Toronto’s Centre for Global eHealth Innovation, calls for immediate innovation in person-centered healthcare and collaborative development of IT to help Canada’s high-functioning but stressed healthcare system: This technology can help us transcend our cognitive, physical, institutional, geographical, cultural, linguistic, and historical boundaries. Or it can contribute to our extinction.³

Designing for care brings a holistic and systemic design perspective to the complex problems of healthcare. We are already improving services by designing better artifacts, communications, and environments. What remains missing is the mindset of professional care in designing for people, practitioners, and societies. Like clinicians, designers in the health field can take responsibility for helping people and societies become healthier in all aspects of living.

Technology Will Not Save Healthcare

Technologists advocate for disruptive innovation in healthcare, a call that envisions radical change for consumers as well as the largest institutions. The two targets of disruption are typically hospital-based institutional healthcare and the medical care model itself. The cure is envisioned to be a future of low-cost networked computer technology owned by consumers, not clinicians. A kit can be imagined consisting of embedded sensors connected to a handset, cloud-based data collection with instant analytics, and continuous-learning algorithms that diagnose individual conditions based on rapid sensor tests and genetic analysis. Possible new treatments are not described clearly, but still an accountable person will be needed to administer injections and judge the appropriate therapy and medications. A problem with such scenarios is that they project a future driven by technological determinism—because it can be done, it will be done.

The decentralized future of medicine scenarios articulate radical changes in technology but fail to address changes in cultural meaning. As pictured by Silicon Valley, healthcare could be decentralized and fragmented into defined care streams that the user (the patient) would navigate as self-service interfaces. In effect, these scenarios shift care decisions to consumers who might be existentially vulnerable to their own poor decisions (as well as to new types of usability risks). If patients are forced by economic changes to trust a technology instead of a physician, the ethics of brave new healthcare scenarios become socially problematic.

The technologically determined scenarios suggest a sociological change more radical than any other system designed in human society. Healthcare is the world’s largest employment base, with national health systems among the largest employers in their respective countries. Such a disruption would ignore the sociotechnical foundation of healthcare that underlies practice, education, policy, employment, and the very meaning of care. It risks replacing medicine with a new corporate system devoid of human socioculture or caring, treating diseases as functional states mediated by robots. Although the enabling technologies can and will be developed, their implementation will look very little like the visions of computational personalized medicine imagined by technological utopians (and investors standing to benefit).

Another focus of disruptive change is the US private insurance model, which turns on policy innovation and not technology. Innovation in insurance-managed payments to guarantee equitable care services might make the single largest difference in people’s everyday lives. If patients did not have to worry about going bankrupt to pay for the noncovered costs for healthcare services, they would view their health and self-care differently. Although not a perfect policy for either citizens or providers, the Affordable Care Act (Obamacare) established a new framework for policy innovation to occur, to meet the goals of covering uninsured Americans and managing aggregate costs. If the system were not based on profit-seeking business models, innovative new care practices would be designed and implemented. In the United States today, however, with multiple layers of cost accounting and payment review, stakeholders distrust one another, and patients lose out. Unfortunately, the ultimate fix is not technological but political, the results of policy innovation to ensure universal coverage and appropriate technology support.

Major policy changes will be necessary to encourage the risk-averse health industry to accept system-wide innovation. Today, healthcare systems and their management are the biggest barriers to meaningful innovation, as they have so much to lose in a paradigmatic shift.

Even the most radical breakthrough technologies often demonstrate only incremental improvements to the service and experience of care. As new clinical services are developed around emerging medical technologies, the form and function of current practice will change only modestly, perhaps not even perceptibly to patients. Due to culture, risk, payment, generally accepted practices, and other systemic factors, technological change is often not leveraged as an opportunity to change policy and practice.

Both of these envisioned disruptions shift profits and costs, winners and losers. Only the disruption of the insurance industry guarantees a beneficial cost shift to consumers in the near term. There are no guarantees that technological disruption will pass end savings to consumers. Though low-cost systems can be developed, there are no social provisions for regulating the resulting business models and new corporate entities that could manage health technologies. If the pharmaceutical industry (which is rarely mentioned as a target for disruption) cannot innovate new business models, it seems misguided to believe that emerging technologies slated to replace physicians will be priced any differently than pharmaceutical products.

In a market-based system, disruptive innovations create real competitive value by making long-established services obsolete. But even if many healthcare services are profit-based, should innovation best be envisioned as enabling a competitive economic outcome? How does disruption help healthcare? Human lives are at stake, not merely profits.

Innovation of Human-Centered Care Systems

All-out radical technological change is not the only way to create value for health seekers and reduce exponential costs. A better way to innovate might be found in designing human-centered care systems.

The human-centered design of healthcare has never been more necessary. Leading innovation provocateur Don Norman, with designer and author Roberto Verganti, proposed a concept and solution to the paradox of merely incremental innovation from human-centered design.⁴ They position radical and incremental technology innovation against radical and incremental innovation of meaning. The position emerged from Norman’s observation that only new technologies were found to trigger radical change. And yes, he found that human-centered design research (studying users in their native habitat) rarely, if ever, led to disruptive innovation. Though essential to incremental improvements in technological systems from airplanes to software, design research fails to find breakthroughs, due in part to the fact that radical changes cannot be extrapolated from observing practice. Further, user evidence tends to reinforce the very practices being studied, as user behavior is defined by its goals and productivity, not the experimentation that might lead to completely new practices.

The shift to cultural and practice innovation is found in the other half of the Norman-Verganti equation: the radical innovation of meaning. What Verganti calls design-led innovation involves redefining the socially recognized meaning of technology or a practice. Sociotechnical practices in healthcare may be reframed (without radically changing technologies) to shift the social purpose. The accountable care organization (ACO) model promoted by new US legislation carries the seeds of new value propositions that have yet to be tested. The essential meaning change is that of localized care centers with more attention to patient life needs to reduce readmittances. Although ACOs might become radically patient-centered, perhaps the most significant value will emerge in the social meaning change, with new types of care practices being envisioned that reinvent the relationship of providers and health seekers. These practices and their business models offer fertile ground for the new types of designers being trained in socially aware innovation.

Disruptive innovations that we see in other industries may have less of a role in healthcare, even though the opportunities for new technology are clearly present. Healthcare facilities are not early adopters. New software, devices, and systems take time to learn and socialize, and the investment of professional time and budget in training and ramp-up is quite expensive. The expense of these social costs can outweigh the benefit of adoption. For example, desktop computers took years to infiltrate hospitals, and by the time they were ubiquitous in the clinic, they had become common in homes. Minimal training was necessary because the technology was already pervasive. The use of mobile devices is following the same late adopter cycle, allowing for a more natural (less forced) introduction of new devices into high-performance, high-risk clinical environments.

Even information systems require mammoth projects for system-wide implementation. The adoption of new services and systems is by no means a given. Breakthrough medical technologies are also not adopted immediately by institutions. New technologies, devices, and therapies require extensive review and evaluation through animal and human trials, developmental testing, and regulatory approvals. Changes in practice may take months or even years to filter through an institution or system diffused across regions and affiliation. For example, the truly disruptive da Vinci robotic surgery system did not change medical practice as we know it. It allows skilled surgeons to operate on remote and special-case patients who were previously underserved. Da Vinci signals the start of a new trend that might increase capital costs (as hospitals must all acquire it to compete) as well as lower surgery costs, potentially having a democratizing effect of equalizing the quality of routine surgeries across regions.

Da Vinci is a disruptive technology that shows significant yet incremental effects. Organizations absorb the new system into the current business model. For now at least, hospitals remain big box clinical institutions. Technology and product design have only incremental effects on the patient experience. Patients must still be prepped and undergo an invasive procedure, yet now with the much greater convenience of being able to show up at a community-based clinic in the healthcare network. Change is difficult for doctors, and adaptation to changes can be discomforting for patients.

This perspective of redesigning existing practices explodes one of the most treasured myths of innovation. Many authors suggest that disruptive interventions have the highest impact and are therefore the aim of innovation. Innovation theories celebrate the value of disruptive innovation as the most competitive form of innovation. Yet what are the purposes of disruptive healthcare innovation? To improve efficiencies, costs, practices, or patient experiences?

We might reframe the purposes of disruptive innovation in institutional healthcare based on the experience with platforms and devices. The da Vinci system performs operative functions that surgical teams can understand and integrate within well-defined routines. It doesn’t disrupt the function of surgery, but rather the way routine operations are physically performed. Information technologies tend to disrupt clinical work in ways that may reduce efficiency of performance. New systems require training and ramp-up time (away from patients). Additional time must be allocated for electronic entries for the purported benefit of administration, not patients.

Consider the societal value of an innovation from the perspective of those most affected by the results. Does a simple value analysis show benefit to all direct stakeholders? Will health seekers benefit from the change?

Are There Users of Care?

Healthcare is a complicated business, and can be a complicated context for design. Multiple stakeholders (from consumers and patients to clinical staff, administrators, and insurers) interact with multiple services (from primary care to academic institutional networks) in multiple sectors (from clinical practice to insurance and government). Traditional user-centered design practices are insufficiently powerful to solve problems at this level of complexity. We can easily and mistakenly design a perfect product or service for our users, yet remain disconnected from the other systems and stakeholders the service may affect.

In health contexts, the risks to health and the effects on practice are always considered. Healthcare environments require the use of far more rigorous design and development methods than the contemporary trend in user experience (UX) and service design. Involving both significant financial and human life impacts, investment decisions are based on evidence, with a strong organizational bias toward statistical evidence.

Designers face a recurring challenge in every healthcare project—to envision the scope for service sufficient to meet future needs and growing complexity. We design for situations that have multiple interacting workflows, poor integration, layers of legacy infrastructure, and highly dispersed applications. These legacies constrain the ability to design services across departments, institutions, or at any level we consider as the system.

Healthcare is a large-scale distributed system dedicated to serving individuals with health needs but who are not the paying customer. This is a classic dilemma of service and experience design: the patient (the end user) has little decision-making power but a life-critical need; the institutional customer (who pays) has significant power but little understanding of need.

Patients and practitioners are changing the balance of power through improved transparency and access to information. But these social, human, and information interactions magnify the technical complexities because they introduce new uncertainties to decisions and transactions.

UX design advocates understanding and designing for the optimal user interaction. It often supposes an interactive product with specified uses in a work (or point of care) context. User-centered design has served as a sufficiently powerful methodology for a generation, and health informatics and technologies have improved significantly, if incrementally. A generation of experience designers has been trained to represent the interests and needs of users, and we have institutionalized the user as shorthand for design (user-centered) and usability (user-friendly). However, there is no single user in healthcare, and the convention of referring to users may be misleading in the context of care.

In healthcare practice and design, the vocabulary and perception of the human subject is dominated by three primary frames: user, patient, and consumer. All three designations are passive, objectified representations that constrain a