What is human-centered health care and why is it important?

An excerpt from Health Design Thinking: Creating Products and Services for Better Health.

Design is the ancient practice of shaping materials to achieve goals and express beliefs. Human beings and other creatures make tools and build structures in order to survive, thrive, and dominate their surroundings. Unlike other organisms, people learn from each other, creating new ideas and inventions that spread quickly.

Designers learn to look at a given situation—from the layout of a room to the shape of a door handle—and consider how it could be changed, improved, or embellished. Human-centered design asks how new approaches to a problem might improve people’s lives. Well-being is the ultimate goal of any human-centered intervention.

You might be wondering, “Isn’t all design human centered?” In fact, the design process doesn’t always focus on the needs or desires of individuals. During the Industrial Revolution, familiar things once made by hand—from tableware to textiles—were produced with machines and sold for profit, while steam locomotives, plumbed toilets, and other new technologies transformed cities and homes around the globe. A door handle could be designed with rococo curves or cubist angles to express a unique artistic sensibility, or it could be engineered with modular parts for low-cost manufacturing.

The concept of shaping products to the human body (ergonomics) appeared in the mid-twentieth century, when designers began using research on human behavior and anatomy to simplify everything from telephones to farm equipment. Lever-style door handles—now standard in hospitals and public buildings—allow hands-free operation. This innovation, which reflects the principles of universal design, rejected the conventional pattern of the round doorknob.

More recently, users have become active participants in the design process. Human-centered design is inclusive and collaborative, approaching members of a community as experts in their own life challenges. Users are active participants and creators of knowledge, not passive subjects to be measured and manipulated.

Like the design profession, the health care field has sharpened its focus on human needs. Early hospitals in the West, which belonged to churches, applied spiritual care to the ailing body. As medicine became more scientific, charitable hospitals were established to tend to the poor. The patients in these places had no power and no great chance of being healed. They were research subjects in the drive to uncover the science of disease. (Wealthy people were cared for in their private homes by doctors.)

In the early twentieth century, modern hospitals signaled the rising power of the doctor, who became one of society’s most admired members. Nursing was elevated from a marginal occupation to a respected profession. Open wards were replaced with private and semiprivate rooms, attracting wealthy patients. Designed for cleanliness and efficiency, modern hospitals enabled people to recover from illness and injury in ways once unimaginable. Yet these monuments to progress could be forbidding, unwelcoming places.

Historically, hospitals have resembled anything from monasteries or prisons to hotels or office towers. Today, vast health networks sprawl across cities and regions, serving as engines of employment and economic growth. Contemporary hospitals are places of constant coming and going, where outpatient treatments are more common than extended stays. Hospital design must account for complex equipment, disaster-safe infrastructure, and the daily flow of thousands of patients, families, and workers.

Doctors dominated the first modern hospitals, supported by nurses and other staff in a strict hierarchy of power and control. In the ideal hospital of today, patients occupy the center. Individuals participate in their own care and have control over their environments. Public areas and patient rooms include ample space for families, and these spaces use color, light, and materials to foster comfort.

Alas, many hospitals fail to meet these standards, and too many people lack access to care. Around the world, disparities in health outcomes reflect egregious income inequality and systemic racism. In the U.S., a patchy and opaque health care system is muddled by profit motives and political gamesmanship.

Design for health care extends beyond improving the layout of lobbies and treatment rooms and creating more ergonomic medical devices. Many opportunities for design intervention arise from the area of service design. Such projects can include anything from improving the process of obtaining informed consent to building awareness of treatments that are available but underutilized within a community. A service design project might include designing clear and engaging educational materials and developing new protocols for how clinicians exchange this information with patients and the public.

Research studies are being transformed by human-centered design, which includes stakeholders throughout the process. Medical researchers are beginning to apply design principles and methods to ask better study questions, gain fresh insight, and study the effectiveness of medical interventions. The quantitative methods of medical researchers can intersect productively with the qualitative insights of designers.

In a study of procedures for discharging pediatric patients treated with asthma in emergency departments, designers at the IIT Institute of Design collaborated with researchers at the University of Illinois at Chicago to study how people can better manage their asthma at home. Funded by a $4 million Patient-Centered Outcomes Research Institute (PCORI) grant, researchers conducted a randomized control trial called the Coordinated Healthcare Interventions for Childhood Asthma Gaps in Outcomes, or the CHICAGO Trial.

By employing the principles of co-design and prototyping, the design team created new tools aimed at improving the emergency department (ED) discharge experience. In the existing process, caregivers are subjected to a long verbal statement accompanied by five to fifteen pages of densely typed text. The design team conducted co-design workshops with multiple stakeholders, including caregivers, primary care physicians, and ED doctors, nurses, and nurse adminstrators. They conducted interviews in family homes and observed people in six EDs. Building on this research, the team designed a new discharge tool that transforms the existing one-way, top-down information flow into a two-way conversation, organized into simple actions that can be easily implemented by clinicians. The effectiveness of this new service was compared to the usual procedure. Children whose discharge included the new patient education tool were more likely to use medications at home (including steroids, inhaler medicine, and rescue medicine) and were more likely to schedule an office visit.

The study was funded by a Patient-Centered Outcomes Research Institute (PCORI) grant, which requires patient involvement. Health design thinking challenges the current hierarchical process of medical research, which focuses on academic expertise, by actively engaging diverse stakeholders. By demonstrating the success of integrating design into research, such studies anticipate a more collaborative approach among patients, caregivers, researchers, and clinicians.

What does the future of health care hold? Medical services are moving into homes and neighborhoods. Accessible environments enable aging in place. Diagnostic tools designed for use at home allow people to monitor their heart rate, oxygen levels, and other health indicators, and to share data with doctors. Patients are pioneering the invention of new devices and services. The Night­scout Foundation, established by families of children with diabetes, hacks existing technology so that parents can monitor glucose levels when their children are away or at school.

Diagnostic devices using mobile phones as monitors are being deployed in communities where radiologists are in short supply. AI (artificial intelligence) systems can read such scans for early signs of cancer or diabetic blindness. Designed for use by community health workers and patients, such tools can put expertise into more hands.

Design cannot solve every health care problem. However, human-centered thinking has the power to start chipping away at entrenched patterns within the medical community and in society at large that perpetuate health inequality. Change is difficult in a hospital, where mistakes are costly and can seriously damage human lives. Not every proposal is implemented, and not every intervention succeeds. Change requires the space and the courage to test new ideas. Human-centered design is one crucial tool for distributing medical advances to more communities, not just to the most privileged. Human-centered health care sees people not as patients defined by illness or impairment but as individuals on the journey of life.

Bon Ku is a physician and founder, Health Design Lab at Sidney Kimmel Medical College. Ellen Lupton is a graphic designer and curator, Cooper Hewitt Smithsonian Design Museum. They are the authors of Health Design Thinking: Creating Products and Services for Better Health.

Image credit: Shutterstock.com

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