User-centered design is still (mostly) absent in the healthcare experience.
Part I in a series of opinion articles about what is still missing in healthcare for it to become truly patient-centered.
A year into this pandemic, most of us are still living, loving, and grieving daily in front of our screens. Videoconferencing, a technology that has reliably existed for casual consumer use for almost 15 years, became a mainstay for “telecommuting” and a powerful instrument of presence in palliative care. Videoconferencing has kept people connected with loved ones stranded in managed care facilities and helped with final goodbyes in ICUs. “Screen time,” previously linked to a sedentary life, eye strain, depression, and self-harm (and much more), is now our “family time,” or “partner time” or “friend time.” The year 2020 inverted almost everyone’s thinking about screens, transfiguring them into lifesaving and life-changing machines, for better or worse.
The year 2020 became the year that many of us discovered the limits of our internet connections and the abundant vulnerabilities and pockets of inequalities in aging telecommunications grids. Technological disparities became more visible via our students’ missing faces in Zoom who could not turn on video because their connection was too weak or bottlenecked from sharing (among other things). More recently, technological disparities have become visible in even more mundane ways. For example, the act of booking vaccine appointments seems to require internet literacy and executive function well beyond the basics and certainly well above what the people who need it most seem to possess.
It’s also only because of the pandemic that certain technologies, such as digital therapeutics, fell conveniently into the “telehealth” bucket and managed to get some approvals. While that’s great for the start-up companies involved with these technologies, the widespread deployment of reasonable telehealth solutions has been far from possible. Beyond our telecommunications grid being unprepared, our healthcare structure lacks agility for practical and lifesaving solutions unless we’re talking about compassionate use of a device or treatment in rare conditions or last-resort situations. Therefore, I’d like to pose a straightforward question: why is compassionate use of technology only reserved for end-of-times or end-of-life, when many people live in consistently desperate times throughout their lives?
Besides being a privileged academic who can do much of her work behind a screen (even with mediocre internet), I have chronic health problems. The healthcare system sees me not as a person but as someone who is a needy “frequent flyer” with multiple “comorbidities” and “pre-existing conditions.” In a terrible year, I may need as many as 40 in-person visits to a healthcare facility. In a terrific year, perhaps I can get away with 10. Two-thirds of these visits do not require in-person contact. Still, regulatory bureaucracy and the pervasive absence of practical imagination in healthcare policy prevent the replacement of this in-person contact with a simple email or video follow-up. Until the pandemic arrived, and suddenly everything became possible, leaving us wondering why we’d previously been forced to jump through inconvenient hoops that often increased our suffering when a solution was possible all along.
As both a patient and a person who designs “user experiences” related to healthcare, I spend my daily life in some form of cognitive dissonance. In fact, I have spent my entire life in front of a screen, starting with the personal computer in the early 80s. I remember doing all my holiday shopping online in 1997 on Amazon, which, at the time, billed itself as “the world’s largest bookstore,” breathing a deep sigh of relief that I could avoid a freezing midwestern winter and large crowds at the mall sneezing in my general direction. I hoped this would portend good things and wondered when the revolutionary act of a healthcare provider coming to my home would be feasible again, just like when I was a child growing up in Greece. The pediatrician was a phone call away (on a landline), after which they could show up to diagnose a fever.
There is not a single day that I am not thinking about how a healthcare experience can be better. Yet, I find myself debating over not what already is possible (because the technologies exist), but over what seems to be so hard to deploy: compassion. Compassionate healthcare is a concept that goes in and out of vogue in public health conversations, but there isn’t a single moment in which we should take compassion for granted. The concept is often linked with a charitable disposition (e.g., nursing) and perhaps even religion. Thus, it gets easily tossed out when “cutting-edge” medical tech arrives with a promise that it can fix everything. And yet, toiling to gain access to the electronic health record is still a prevalent issue.
The cognitive dissonance grows daily, and I ponder many of the following:
- We have personalized cancer treatments for those who can afford them, but not home or telehealth visits as a de-facto option for anyone who needs it: the terminally ill, elderly and disabled, anyone caregiving for a child or adult, or those simply unable to afford time away from work for a medical appointment or the fees for paid parking.
- We have cumbersome electronic health record systems and redundant intake forms fifteen years behind in usability standards and interface design. Yet, anyone with a DIY home business can set up an e-commerce operation to sell their goods in less than an hour on Shopify or Etsy.
- We have an epidemic of drug misuse even though non-pharmacological interventions for pain could be delivered via smartphone or even a low-cost virtual reality headset. The technology is available, albeit still in need of scientific rigor.
- We suffer polypharmacy consequences because it is too complicated to arrange coordinated care between health records that lack interoperability, often (mis)using privacy policies as an excuse.
- We have remote-controlled technologies for sensing and surveillance, which we use for warfare but not for delivering in-home healthcare and home-based rehabilitation.
I am oversimplifying for some effect, but only to point out that the technologies themselves exist. It is only our good intentions and imagination that find themselves missing in action. The premise of compassionate technology is so simple that it is banal, getting pushed aside in favor of shiny new technologies until someone feels in their bones some form of suffering relieved by compassion. I, too, am utterly enamored with new technologies because some save my life every day; a smartphone-enabled ECG device small enough to fit in my pocket has kept me out of the emergency room for several years now.
My heart skips a beat, however, for other types of moments of “groundbreaking innovation.” It feels like I’ve landed on the moon when my doctor gives me their cell phone or email to reach them “anytime.” I am shocked when I can book a telehealth session with the ease of buying on Amazon. I am moved to tears when a doctor or phlebotomist comes to the home to assist an elder. I am soothed when YouTube recommends some music I can sleep to. I feel nostalgia when my Facebook health support group livestreams a new episode about preparation for a 48-hour urine collection.
There is, in fact, so much more that’s possible to improve in healthcare if we put our screens (and all our gadgets) to better use. The concept of compassionate technology exists to remind us that technology is not self-created even when it is self-administered. Nor is it a passive instrument. People design technology, and, in turn, the technology affects other people because design is the most potent policymaking tool we have — people design technology that affects people. The intent, ethics, and social contract of this continuum often suffer from neglect, compromise, and even malice. The pandemic has made many people think hard about how technology mediates our lives, and while the social contract was renewed in some places, it was broken anew in others.
I remember the excitement surrounding the concept of the 5-Ps of medicine: predictive, preventive, participatory, personalized, precision. But, in 2021, I am still reading about frenzied efforts of people acting as “vaccine Sherpas,” booking appointments for friends and relatives who cannot navigate the system. I am still buried in receipts that I will probably never be able to get reimbursement for because it will take an in-person visit and a plea for filling out a paper form (that I have to scan and upload and wait) to justify that my need for a supplement is not trivial or recreational (god forbid). Somewhere in the system, this workflow can be fixed via a policy enabled by the design of a checkbox located in the right place on my health record that can push data to my insurance provider. Is it not cruel to have to request physician verification letters every 12 months for incurable health conditions?
As a designer, I know that relief from suffering is essential, but so is providing pleasure. When my study participants with Parkinson’s experience joy and walk a step further in their rehab because of a VR experience, it is because my teammates deployed compassion in the form of user-centered design. When a new paper is published on the efficacy of a pain management VR experience (that I may have something to do with), it is because, for more than two decades, many people understood VR as a compassionate technology that does more than merely provide a distraction.
Healthcare and medicine are many things to many people, but they still are not human-centered experiences that leverage basic principles of user-centered design, including accessibility. Thus, however simple, any associated technologies, when deployed without compassion, become instruments of oppression and suffering. I challenge you to think of counting unnecessary mouse clicks, and key presses, and parking, bus, train, and gasoline receipts that could be reduced or eliminated if we put our screens to good use. It will require imagination, but I have good news: that technology already exists, and it is relatively abundant.
Marientina Gotsis is an artist, professor, and academic researcher who has been consulting as a design and information technology expert in the non-profit and corporate sector since 1995.
Edited by Stacy Davies.