A version of this post has been published on Medium.
My nightmare experience with the healthcare system several years ago prompted me to commit to playing a role in fixing it. Among the things I’ve done since then are write and publish lots of articles and blogposts and speak at lots of events, telling about my nightmare, sharing similar stories of others, and addressing what designers need to know and do to increase their contribution to such a fix. Most recently, I did these things in the context of teaching a course at the Austin Center for Design, an educational institution focused on applying design and entrepreneurship in the space of large-scale “wicked problems.” Our broken healthcare system is one such wicked problem.
The course I’m referring to is an advanced theory course, but one during which we examined the relevance of theory to design and social entrepreneurial practice today. We addressed healthcare during two parts of the course: one focused on what limits what we can imagine, the other on the opportunities of entrepreneurship.
Some of what limits what can be imagined within the healthcare system is addressed very powerfully in “How Medicine Constructs its Objects,” a chapter in a book written by Dr. Byron Good. The chapter is one of the readings I assigned to students. In it, Good provides an anthropological perspective on Harvard Medical School education, describing how students learn “fundamental practices.” Here is a series of quotes I used in class to guide discussion of this chapter — notice the emphasis on objectifying the patient, the power of the write-up and of presenting patients, and the pressure to fall in line:
"Entry into the world of medicine is accomplished not only by learning the language and knowledge base of medicine, but by learning fundamental practices through which medical practitioners engage and formulate reality in a specifically “medical” way. These include specialized ways of seeing, writing, and speaking."
"Within the lifeworld of medicine, the body is newly constituted as a medical body, quite distinct from the bodies with which we interact in everyday life."
From a student:
"I would occasionally be walking along a street and find myself attending to anatomical features of persons I passed, rather than perceiving them as persons with social characteristics…"
"This reconstruction of the person is essential to a student becoming a competent physician."
"When first learning medical interviewing “I felt that it was a great privilege for me to hear some intimate details of their lives” and she would spend time listening to what patients wanted to talk about. By the fourth year, however, she said “you start to develop this sense of ‘well, I have a job to do here and I’m doing something for you, so I’m going to just do it as efficiently as I can.’"
From a student:
"You’re not there to just talk with people and learn about their lives and nurture them. You’re not there for that."
From a student:
"One thing about medicine I actually admire is [that] there really is an ideal of clarity…and [logical presentation]. The ideal write-up has sort of all the facts that argue in favor, and all the facts that argue against, and conclusions drawn from those… drawn together in sort of a summarizing formulation about what you think is going on and then a plan of attack. I mean, something is very satisfying about that. Of course the real world doesn’t lend itself to that, so you distort the real world a little bit to make it fit that nice pattern."
"Writing both reflects and shapes conversations with patients. It provides the categories and structures of those conversations, and it represents a structure of relevance that justifies the systematic discounting of the patient’s narrative."
"There is an enormous social science literature on doctor-patient communications. In our interviews, however, medical students indicate relatively little concern about this domain of talk. In part this is because it constitutes a surprisingly small amount of time. … But the medical students’ lack of concern about their conversations with patients is also a result of their perception that the central speech acts in medical practice are not interviewing patients but presenting patients."
"Doing case presentations is probably the main thing you concentrate on… for the medical student, their one chance to be in the lime light is when they present, and it’s also probably the area where you’re most likely to either gain the respect or the annoyance of your colleagues, and especially your superiors…"
"Students become quickly aware of the performance dimension. They rehearse presentations, learn to give them without notes, even to make up details if they do not remember them exactly, and are very aware of the response. If the performance is not successful, the team members start fidgeting, rolling their eyes, … And this is the single most important source for criticism or approval which students experience in the early stages of clinical training. “It’s not how much time you spend with your patients or how caring you are with them or how good a rapport you establish with them…”, but your presentation of cases.”"
Little surprise that humanizing the healthcare experience is considered by many to be healthcare’s number 1 need (see, for example, this recent interview of Dr. Bridget Duffy, former Chief Experience Officer at Cleveland Clinic).
"Students have an awareness of the “conventionality and arbitrariness” of much of what they prescribe, true even of the most dangerous procedures; “They see treatments that have poor outcomes as well as those that provide benefit. They see some residents or attending physicians doing procedures they think should not be done or behaving miserably toward patients. At the same time, they recognize they are not senior enough to judge what should be done, and they feel deeply the pressure to show solidarity, not to question the actions of those up the hierarchy.”"
"The powerful have total control over your self-esteem."
One of the slides I used in class of relevance to all this, referencing Dr. Jay Parkinson’s TEDx talk:
An all-too-common example of how all this gets experienced by patients and their loved ones is powerfully reported in April Starr’s recent “Free ideas from a human-centered designer for hospitals that want to be (or make it seem like they are) patient-centric” (another of the readings I assigned to my students):
I had the recent misfortune of watching my husband in severe pain and as a result stay in the hospital for a week. As a human-centered designer, it’s hard for me to turn off my observational and ideation skills so I figured I’d channel my frustrations and provide some free consulting.
Some of her recommendations:
Fucking introduce yourself already.
Who are you? You walk into the room and we don’t know your level, specialty, name, or role. Should we listen to you? What questions can we ask you? Who the fuck knows?
If you are too busy/self-important to introduce yourself, hand over a laminated sheet with a picture, name, and specialty like this:
We will waste your time much less with our annoying, time-consuming questions if we know who you are.
Decouple decision making from communicating.
Upon asking a simple question: who was in charge of my husband’s care, the head of a certain specialty (in front of all her silent and obedient resident ducklings) told me:
“We are like a five-wheeled car being driven by five drivers”.
I responded:
“Well, cars don’t have five wheels or five drivers for a reason.”
She then responded:
“Well, we all may argue but we come to one conclusion at the end of it.”
That wasn’t what I was asking. I wanted to know WHO we should listen to for the final word, not HOW they make decisions. Before this gaggle of 8 people entered the room without knocking, waking up my husband and sucking all the air out, a DIFFERENT group of 5 doctors do the same thing and give us DIFFERENT information. I simply wanted to know who to listen to. Just trying to understand what the fuck is going to happen with the person I’ve decided to share my life with who is in intense pain that’s all. NO BIG DEAL.
If they don’t want to have a hierarchy for decision making, fine. There should still be a designated point person for communication of next steps. Argue and make your decisions behind the scenes, and then send that decision off to ONE person who can come into the room and explain it clearly to the patient.
Decide which is more important to do in front of the patient: teaching or providing medical service.
I understand and realize that residents shadowing doctors is an important way that they learn. However, their presence is disruptive. In one day, we had 5 different groups of residents and their arrogant leaders come by and wake my husband up to ask the same set of questions that have been documented in his chart (that 5-wheel car doctor seems to think everyone is reading).
If patients are in pain, had a rough night of sleep (all of this documented, RIGHT?) then give them a fucking break and pick on the other patients who slept better and are more in the 1–5 pain range.
Really understand why you became a doctor & adjust accordingly.
Do you REALLY want to help people or do you like solving medical problems? If it’s the latter, maybe you should stay behind the scenes and let the people who are good at caregiving and communicating do what they are good at.
Ok, but you are still a control freak and want to stroke your ego by talking with the patient in front of all your resident minions? Fine, but then adjust your comunication style when you cross the threshold. Don’t use acronyms, don’t assume we understand medical terminology, let us speak occasionally…etc.
I also shared some of April’s subsequent tweets in class:
And, sadly, this one:
Three days ago, April published “MORE free ideas from a human-centered designer for hospitals.” It includes:
Humanize the medical case.
My husband had had a rough night in the hospital. He had been up all night with with a lot of pain. In the morning when I arrived he had finally fallen asleep and I sat quietly in the corner. Unfortunately, it was 9am and rounds had started. I overheard our case being read outside the door “Male, age 42, presented with diarrhea, large mass on the left lobe of the liver…” I felt a knot form in my stomach and my blood start to boil but couldn’t figure out why I was so angry. They kept talking about him and I finally got up, opened the door and stood outside so they would know I could hear them talking about him. They didn’t stop talking when they saw me emerge from the door. I stood there for a few seconds, hoping someone would realize how rude and disruptive they were being. Eventually I blurted out (possibly not my finest moment) “My husband is resting. We can hear everything you are saying and it makes us feel like he’s a piece of meat. Can’t you talk about his case down the hall so we can’t hear you? Can’t you see in the files that it’s been 3 weeks since this started and it’s still very emotionally raw for us? Maybe skip over this one today. Or ask us first.” To his credit, the doctor was very apologetic while the residents just stared at me like I was a crazy person (you try watching a loved one deal with a painful medical condition without going crazy!).
There were obvious indicators in the data that this was a unique and emotionally charged situation. The doctors also didn’t realize or care. I think that if some personal, and not just medical, details had been highlighted in the case (for example: that he was healthy before all this — he had just had a full physical with no problems 2 weeks prior, he has a 6 year old son, loves to bike, and works as an innovation consultant, and that he still didn’t have a diagnosis) maybe the doctors and residents would have seen us as people, not just a medical oddity to be discussed openly in the hallway.
Teaching hospitals need to consider the impact these VERY different objectives (teaching residents and caring for patients) have on one another. There may be situations where it makes sense to blend activities and others that require a clear separation between them. One way to blend the two activities would be to humanize the medical case. Adding personal details can remind the doctors that these are real people, create a bridge between doctor and patient and encourage the doctors to treat people like people. It would also help patients potentially learn more about the medical side of things if they were a part of the conversation. However other times there should also be a clear separation of activities: when teaching residents, talk about the medical cases (especially sensitive ones) BEFORE you walk to the hospital room. Don’t talk about “the case” in front of them like they aren’t there. Duh.
In class, I also shared a handful of the many thousands of stories of patients experiencing medical misdiagnosis. In “Brain on Fire: My Month of Madness,” Susannah Cahalan, whose misdiagnosis was similar to mine, writes: “we live in a time when the rate of misdiagnoses in the United States has shown no improvement since the 1930s.” According to some analyses, misdiagnoses and other “medical errors are the third most common cause of death in the United States.”
How can this be? Dr. Brian Goldman’s powerful TEDx talk, which I showed in class, details an important part of the answer as referenced on this slide:
In the more recent, “A physician experiences a medical error. Here’s her story,” Dr. Maja Castillo writes:
After my experience, several colleagues recounted cases of the same error at their institutions. How can a potentially lethal error happen again and again at different institutions without leading to a systemic change in medical practice? How can we not see the need for a universal system to record and analyze errors?
It will be no easy task to study medical errors. For too long our culture of blame has shrouded the subject in fear, guilt, and shame. Medical professionals are taught early on that they are dealing with people’s lives, and mistakes are unacceptable. Instead of learning how to assess and respond to errors we are taught to suppress and ignore, as happened in my situation. Our laws perpetuate this process by treating malpractice cases as the fault of single individuals instead of systemic failures. There is no safe space for medical professionals to openly discuss errors without fear of repercussions.
Three more slides I used referencing TEDx talks, referencing the concept of the god-complex:
(I showed the video of Dr. Jeff Benabio’s talk in class, since he describes how and why physicians have needed to reinvent themselves throughout history and how and why new technologies are requiring physicians to reinvent themselves again.)
Some take a wholistic view. As Stacey Chang recently wrote in another assigned reading, “Health Care — A Final Frontier for Design”:
The dysfunction of our modern health care system isn’t about failure of intention, but rather pursuit of siloed and sometimes conflicting priorities. The needs of clinicians haven’t always aligned with the needs of patients, and both are subject to the demands of payers and regulators, and the financial limitations and business strategy of the provider organization. When each party manipulates and adapts to meet its own needs without regard to the needs of the others, it creates the incoherent mess we call our health care “system.” Medical professionals are trapped in the episode-driven fee-for-service revenue machine that defines value by productivity rather than impact on the patient’s health. Patients are trapped in the 10-minute office visit, the formularies and preauthorizations that second-guess their physicians, and arbitrary limits on visits for physical therapy or psychotherapy that ignore their needs and their rate of progress. Patients bypass their doctor for the drugstore clinic, or just don’t bother until they’re really sick. Both clinicians and patients get lost regularly in the systems that surround them, be it EHRs that prioritize accounting or hospital campuses that haphazardly add spaces to accommodate new services or capabilities.
Chang, the Founding and Executive Director of the Design Institute for Health at the University of Texas at Austin, comments on the role design has played thus far in healthcare:
Design interventions in health care have tended to be piecemeal. They address specific aspects of the ecosystem — more friendly clinic experiences, easier-to-use medical devices, improved medication adherence, more effective care protocols — but don’t achieve the large-scale transformation that design has activated in other industries.
At an Austin Forum I took my students to, Dr. Mini Kahlon of the Dell Medical School and Ed Park of athenahealth were critical of Silicon Valley’s role in this:
More from Chang, this time referencing new opportunities for design in medicine, particularly in the context of medical education:
The Design Institute for Health aspires to establish ways to achieve [large-scale] transformation through a new type of collaboration.
The governing principle is that patient and provider experiences are designed to produce a shared responsibility for the ultimate outcome, in a model that continuously learns and evolves.
To be fluent in these new models, students of medicine and other health professions need different training. At the Dell Medical School, students transition earlier than usual from classroom learning to clinical rotations in order to clear time in their second and third year, when they are taught design skills. (For example, students will learn how to conduct ethnographic inquiries to learn about the needs, pains, and motivations of clinical and social service providers in the community.) They apply those skills by identifying systemic health challenges in the community, conducting unconventional research, and then developing new solutions. The most compelling efforts are then incorporated into the strategic work of the medical school, turning students into allies of change, instead of just recipients of a traditional curriculum.
Underlying the new models is theory, as described in another assigned reading, “The Future of Health Care?”:
[Dean of the Dell Medical School, Clay] Johnston and others point to the theoretical work of Elizabeth Teisberg and Martin Harris, developing the Med School's "value-based" approach to health care systems: finding ways to produce and quantify better outcomes for patients. Teisberg is the author (with Michael Porter) of Redefining Health Care: Creating Value-Based Competition on Results (2006), a seminal work in the field, arguing that the profession and the industry must shift from the fee-for-service model that currently governs medical practice, hospital finances, and health insurance plans, to a value-based structure that measures and rewards health outcomes – and over time, by eliminating unnecessary and repetitive treatments, broadly reduces the cost of care. Teisberg, now a full professor and executive director of Dell's Value Institute for Health and Care, and colleague Scott Wallace summarize their approach in a recent article, "Four Steps Within Your Stride" (www.healthmanagement.org): measure outcomes; document "care paths" to determine best practices; use integrated teams of varied expertise across the patient's full cycle of care; design solutions that incorporate the direct experience of patients. Elsewhere, Teisberg summarizes the value-based goals: "Higher value opens the opportunity to enable better health for more people with the same resources."
Such a theory sets the stage for radical innovation, but some are wary of this theory, including Dr. Jay Parkinson whom I quoted earlier:
Even a faculty member at the Dell Medical School (Dr. Ted Held) expressed some doubts about it in response to a question from me at a recent event at which he was speaking.
But other attempts at shifting to a value-based approach have begun to bear fruit, and when coupled with design, great things are likely to happen.
Actually, lots of great things have started to happen, even in Silicon Valley, where Stanford’s Medicine X initiative, with which I’ve been involved as a design advisor, speaker, workshop facilitator, ePatient scholar, and event organizer, has done much to spearhead co-design with patients and, as Dr. Bryan Vartabedian puts it, “the rise of medicine’s creative class”: “there’s an unexplainable high to seeing 400 years of a stagnant profession turned over like rotting compost.” Last month, Medicine X held its first conference focused on medical education; Clay Johnston was a keynote speaker.
I’ve worked a bit with the Dell Medical School. Stacey Chang provided a design project for some of my User Experience Design Immersive students at General Assembly; I featured Chang at a Medicine X event I organized on the University of Texas campus; and I’ve worked on design (process) strategy with the head of a medical department there. Healthcare has been the focus of quite a bit of the work of my design strategy consultancy, OE Strategy.
For more information about the course referenced repeatedly above that I taught at the Austin Center for Design, see “Teaching Theory at AC4D.” There was more to the sections that addressed healthcare and much much more to the entire course.
Lastly, consider following me on Twitter as I continually tweet about things happening in design and social entrepreneurship that are likely to impact the badly needed transformation of our system of healthcare.
