Patient-Centered Design Begins At Home

By Susanne Cohen, Design Science

Medical design research can take place in a variety of locales, from usability labs to focus group rooms, or the operating room itself. While all these places have their merits, some of the most rewarding projects I’ve conducted as a design researcher and consultant have involved visiting patients’ homes.

Accompanied by a videographer, I’ve traveled past cornfields and baseball diamonds to meet patients and families in the spaces they call their own. I’ve shared homemade cookies, chatted with participants on carpeted floors, and listened, watched, and learned how people coping with serious conditions wield the medical tools at their disposal to lead fuller and more independent lives.

A home visit presents a unique opportunity to discover how a patient or caregiver manages medications, supplies, and everyday device use. You see what works and what doesn’t, as well as the mistakes people make when trying to properly use a device after a long day at work or a draining trip to the store. However, the home visit, I would suggest, is about more than use errors. In a home visit, you learn if a participant has a dog, a rabbit, or no pet at all. You may glimpse sports gear, vacation photos, a child’s cartoons on TV. You see who a person lives with and gain a sense of the relationships between mothers and sons, husbands and wives. In other words, you begin to view a participant no longer as just a “patient” or a “user,” but as a whole person with a rich emotional and social life.

Why Conduct Home Visits?

The most common rationale for the home visit is that it provides unique access to a complex real-world environment that can never be fully simulated. While homes have their own rhythms, their conditions differ drastically from testing spaces. Homes typically are host to a variety of activities, from sleep to children’s games, and environmental conditions, such as space, lighting, and noise levels, vary significantly, depending on the time of day. These conditions can significantly impact the usability of a device, especially when eyes are tired or muscles are weak. So, to truly gauge the safety and efficacy of home healthcare products, a visit to the actual use environment (e.g., the home) is an essential step.

Another reason to visit homes is that, simply stated, they are where an increasing amount of medical care now takes place. The home long has been the primary place to nurse a cold, swallow pills, and coordinate trips to the doctor. But now the balance between medical facilities and homes is shifting as telemedicine makes remote care possible, new drug-delivery devices make it easier for patients to self-administer treatments, and wearables merge consumer and healthcare concerns. Understanding what happens at home is also a must for device and pharmaceutical companies embracing a patient-centric approach, in which developing supplementary products and services that improve patient experience is a business priority. 

However, perhaps what makes the home visit most critical is that it reminds us that a patient’s world always is broader than a diagnosis or a device. If we focus only on the device, or how a test subject uses it in the lab, we can miss the product’s actual place in everyday life — how it fits in with, or grates against, peoples’ activities, interests, obligations, and routines.

We also tend to forget about the complex ecosystem in which treatment takes place. To fully grasp unmet needs, it is not enough to consider the user and the technology alone. We also need to understand support systems, supply chains, insurance policies, and the financial and emotional strains of managing a serious condition, both on the patient and on family and friends.

I am trained anthropologist and a firm believer in the central precept of ethnography, whose core method is at the heart of the home visit: to learn about other people, you need to leave your comfort zone, enter the world of your participants, and do your best to understand it.  This is not just a matter of methodology; it also is a matter of perspective. The truly ethnographic approach views patients’ worlds holistically, as complex configurations of medical and everyday practices, and all the systems that impact what people do.

Insights At Home

To provide an example, Design Science conducted a study of how caregivers give medicines to children, which involved both home visits and follow-up observations through remote teleconference. One of the most important findings was that caregivers’ approach to medicine differed dramatically, depending on what type of medicine it was.

Those who needed to administer medications through IVs tended to approach the task as a compartmentalized, isolated activity that always needed to happen in a particular place, in a particular room, in a particular way. However, for those administering medications orally, the dose was part of other everyday routines, from getting the kids ready for school to watching TV. It was not an isolated activity, but rather an integral part of what happened in the living room or the kitchen at that time of day among family and friends — and pets.

Others conducting home visits have found that the medical and nonmedical intertwine in important, and often telling, ways. One study of patients with chronic diseases found during home visits that, in addition to medications and devices, other objects — like couches for meditation and colanders for rinsing fresh produce — play an essential role in patient health routines. These insights pointed to a significant unmet need among chronic disease patients for mobile healthcare solutions that could transcend the home and maintain routines outside its comfortable environment.

Another study based on home visits suggested that much of what sleep apnea patients are looking for in a continuous positive airway pressure (CPAP) device is linked to lifestyle factors, such as living arrangements and personal interests. The result was several personas helping to guide future design decisions including a hip patient with roommates, who prioritized style, and a more spiritually minded persona who appreciated extra features, like sleep masks and restful sounds.  

Certainly, conducting home visits can be challenging. They require flexibility, respect, and willingness to face the uncertainty and messiness of everyday life.  The time investment is considerable, and visiting someone else’s home often means that you have to travel far from your own. However, when approached with a willingness to be open and grasp the many complex facets of peoples’ worlds, there is no place like home.

About the Author

Susanne Cohen is a Senior Researcher for Design Science. She holds a Ph.D. in Anthropology from the University of Michigan and has over 12 years of experience conducting and leading ethnographic research projects. She has taught at the University of Chicago, published several studies in leading professional journals, and worked in the field of health and medical editing.