Sunday, September 03, 2017

On the relationship between design and activism — Jon Kolko in conversation with Richard Anderson

A version of this post has been published on Medium.

When Jon Kolko and I were the Editors-in-Chief of interactions magazine, we would end most issues with a “cafe” conversation on topics of relevance to that issue’s content. We thought we’d resurrect such conversations on topics of relevance to the world of design today.

This first piece might be a little heavy on the quotations — vastly moreso than one would expect of a conversation in an actual café, but I think all the quotations are pertinent and beneficial. Plus, we reserve the right to play fast and loose with the café metaphor, just as some of us might be playing fast and loose with the concept of activism (which Jon argues might not be a good thing).

Richard: I’ve been thinking a lot lately about the relationship between design and activism, as reflected in a panel I assembled and moderated during San Francisco Design Week in June entitled, “Are designers becoming the new activists?”, the Medium post I wrote about the topic and that panel, and the SXSW 2018 panel I hope to moderate on the topic.

To me, human-centered design is, itself, a form of activism by definition, but there was considerable disagreement on the SF panel on the ethics of designers being activists in their role as designers. What is your take on this topic? You founded the Austin Center for Design (AC4D) where students learn design focusing on “humanitarian problems,” “problems that matter,” “to change human behavior and improve the world.” Is AC4D about activism? Is or should design be a form of activism?

Jon: There’s precedent of viewing design as a force for subversive cultural change. Carl DiSalvo’s Adversarial Design is a great text describing how design can be purposefully political, and the work of Dunne and Raby has explored design fictions that — described as speculative — are sometimes dark and politically-charged futures. Adversarial, discursive, speculative, design fiction: these are all design philosophies that overlap around the idea of provocation, or design intended to make us question and rethink the world around us.

But I think in many ways, all design can be a form of activism — a form of bringing about political change. Design proliferates into our lives. The results of design process are all around us in physical form, from chairs to computers to cars and trucks. The results are all around us in behavior change, too. People on trains staring at their phones instead of staring at newspapers, people ordering items delivered to their house instead of going to stores, people dating by swiping left or right. These were all designed and that design is a representative of an underlying design philosophy. The majority of this is driven by profit, which some may argue isn’t a political act. But, for better or worse, profit and politics are intertwined, and unleashing any designed artifact, service, or interaction into the world is to take and argue for a way that society should be.

I realize this isn’t what most people think of, when they think of activism: most probably imagine protests and picketing, fists in the air, signs and banners. Design shapes society in a quieter, or gradual manner, and that’s probably part of the problem with it. It’s silent, subtle, and we can ignore it until one day we realize our society has changed and we’ve changed with it.

I suppose in that way, the writing of Victor Papanek was some of the first “activism literature” for designers, recognizing the negative qualities of mass production and calling attention to these qualities. I’ll quote in full some of my favorite paragraphs from his writing:

“There are few professions more harmful than industrial design, but only a very few of them. And possibly only one profession is phonier. Advertising design, in persuading people to buy things they don’t need, with money they don’t have, in order to impress others who don’t care, is probably the phoniest field in existence today. Industrial design, by concocting the tawdry idiocies hawked by advertisers, comes a close second.

Never before in history have grown men [and women] sat down and seriously designed electric hairbrushes, rhinestone-covered shoehorns, and mink carpeting for bathrooms, and then drawn up elaborate plans to make and sell these gadgets to millions of people. Before, (“in the good old days”) if a person liked killing people, he had to become a general, purchase a coal mine, or else study nuclear physics. Today, industrial design has put murder on a mass production basis.

By designing criminally unsafe automobiles that kill or maim nearly one million people around the world each year, by creating a whole new species of permanent garbage to clutter up the landscape, and by choosing materials and processes that pollute the air we breath, designers have become a dangerous breed. And the skills needed in these activities are carefully taught to young people.”

For me, one of the biggest problems that faces design (and has faced it probably for as long as it was a profession — certainly as far back as Papanek was writing) is that the activism spawned from new products is not purposeful. Objectives of design do shift culture, and do take a political stance — but it’s frequently happenstantial. Political activism drives a purposeful agenda. I think design activism frequently delivers an agenda only by mistake.

It’s because most designers don’t have an opinion and don’t take a stance. They don’t see that their work is political; they view politics and designed culture as separate.

I don’t believe that. They are inextricably intertwined in a culture of capitalism.

Like me, you’ve worked with big brands and large organizations. How do you feel about them — are they political, and was your design work there a form of activism?

Richard: I see large, “traditional” brands increasingly recognizing that their responsibility to society extends beyond side “Corporate Social Responsibility” projects. Michael Porter and Mark Kramer advocated for this very strongly in their 2011 Harvard Business Review article, “Creating Shared Value”:

“the principle of shared value … involves creating economic value in a way that also creates value for society by addressing its needs and challenges. Businesses must reconnect company success with social progress. Shared value is not social responsibility, philanthropy, or even sustainability, but a new way to achieve economic success. It is not on the margin of what companies do but at the center. We believe that it can give rise to the next major transformation of business thinking.

Capitalism is an unparalleled vehicle for meeting human needs, improving efficiency, creating jobs, and building wealth. But a narrow conception of capitalism has prevented business from harnessing its full potential to meet society’s broader challenges. The opportunities have been there all along but have been overlooked. Businesses acting as businesses, not as charitable donors, are the most powerful force for addressing the pressing issues we face. The moment for a new conception of capitalism is now; society’s needs are large and growing, while customers, employees, and a new generation of young people are asking business to step up.”

One business which appears to be stepping up is, to the surprise of many, Walmart (see “Business exists to serve society,” a recent interview of Walmart’s Chief Sustainability Officer), which is why I invited Dan Makoski, VP of Design at Walmart, to be on the “Are designers becoming the new activists?” panel during SF Design Week. But, as he revealed, his design organization is not driving most of the change at Walmart, but it is starting to play an important role. And I think that is typical. Earlier during SF Design Week, I asked Jesse James Garrett, co-founder and chief creative officer of Adaptive Path, whether Adaptive Path’s acquisition by Capital One had resulted in changes to Capital One’s service offerings that are consistent with the concept of activism. His answer was, “No, but we are setting the stage for that to happen.” Indeed, Kendra Shimmell, the Head of Service Design for Adaptive Path @ Capital One, was on my panel and spoke passionately about the activist role that design is only starting to play there.

Also, I see designers becoming increasingly aware of the gradual, subtle changes you reference — changes of questionable value to society — for which they are (partly) responsible. (See, for example, designer Lis Hubert’s poignant description of when she realized she wasn’t all that pleased with “The World that UX is Helping to Create.”) This is starting to prompt designers to change some of how they do their work and the attention they pay to its (possible) ultimate social impact.

Finally, as the people with the most power in large organizations participate in the design process (which is happening more and more, thanks to “design thinking”), design’s positive social impact via those organizations will increase. As described in a recent issue of the The New Yorker, what people typically think of as activism (as you mentioned) more clearly prompts actual change when intertwined with working meaningfully with and through people in power.

I think my work in years past with large brands/organizations has been form of activism, but mostly by definition (as I suggested earlier). I think of my work with smaller brands/organizations as being a more impactful form of activism. But perhaps my most impactful form of activism to date has been my teaching, which better equips people to apply design in environments that are often still somewhat hostile to design and that are often not fully open to allowing design to help set an organization’s agenda.

I wonder if you feel similarly… Do you consider AC4D, your teaching, and your writing to have been your most impactful form of activism?

Jon: I don’t agree that big brands presently have a meaningful activism role, in the sense you are talking about — I think the reality for most of the companies claiming that “we do both profit and impact!” is that the impact is garbage. It’s PR. They certainly could have a more active, purposeful and positive role in shaping our world, and there are tools like the b-corp that enable them to take a more principled stance on social issues, but most that I know that are talking about social impact hold a hackathon or give their employees a day to work with habitat for humanity. It’s BS for them to claim that they are playing a positive role in the world, other than cheaper prices for pickles. They have the biggest megaphone for a message, but the message they choose to shout is that “you can have it for less.” It’s a message of blind consumption, and it’s irresponsible.

But we’re not getting at the real articulation of activism. I’ll go again back to Carl DiSalvo’s book Adversarial Design. He describes that “through designerly means and forms, adversarial design evokes and engages political issues. Adversarial design is a type of political design.”

Adversarial design is activism. This isn’t a new idea. It’s echoed in Citizen Designer, quoting Katherine McCoy (in 1993), as she said “We must stop inadvertently training our students to ignore their convictions and be passive economic servants. Instead, we must help them to clarify their personal values and to give them the tools to recognize when it is appropriate to act on them.”

It’s about articulating an ethical stance, and then being a vocal proponent of that stance. I believe the argument can be made from within a corporation; I think you do too. But the argument is often a subversive one, at odds with a corporate ethos or mandate. And that is where the problem arises. Individual designers may have a message, and may be motivated to rise up and communicate that message in their work. But they are often stifled by their employer, not because the employer says “do not do that” — but because they feel their voice has no role in the context of a big brand. They may be right. The Walmart brand isn’t a mouthpiece for the people that work there — if Dan Makoski (who you reference above) has a particular political view, he probably shouldn’t overtly drive the Walmart brand in that direction.

But designers have a unique opportunity to play a subversive role and communicate their message through less overt means than brand messaging. You reference Lis Hubert’s article; in it, she says “Can we decide to stop supporting UX tactics that are aimed at hijacking the end user’s brain?” That’s part of the problem — her attitude is exactly wrong, if we want to drive political activism. Political change comes from “hijacking the end user’s brain,” with all respect to both Lis and the end user; design is about manipulation, and it’s happening whether we intend it or not. You simply can’t create something without changing someone else’s worldview.

I feel like I’m all over the place. I’ll try to focus. You started by talking about activism, and if I’m teaching it to students. I don’t think so. I think I’m teaching my students to take a stand, backed by an ethical consideration of their role in the world. I hope they work on problems worth solving, rather than the next problem that happens to cross their desk. That’s not activism; it’s having enough of an articulated worldview that they can make selections from a morally consistent place.

I think where I’m arriving is that the word “activism” is special, like “design” or “innovation” — we need to be careful when we use it. I think I talked myself into disagreeing with myself (and disagreeing with you, too). Simply making things with a socially-minded intent in the corporate or governmental machines isn’t being a design activist. Design activism is about leveraging design’s scaling properties to drive a political agenda. As Cameron Tonkinwise describes, “being ethical, in order to avoid politics, is a political position, most definitely if you are trying to design (or redesign existing innovations in) non-government-based social services.”

The big question is: from what moral or ethical stance do you leverage design to pursue a political agenda? Most designers I’ve ever met cling to a liberal agenda. Is there room for design activism with a libertarian or conservative agenda?

Richard: I know that “Sex doesn’t sell any more, activism does, and don’t the big brands know it,” as Alex Holder titled an article in the Guardian earlier this year, but I do see brands increasingly “Competing on Social Purpose” (the title of a piece in the current issue of Harvard Business Review) beyond PR.

And that social purpose need not reflect a liberal agenda, as argued by Richard Eskow in “The sharing economy is a lie: Uber, Ayn Rand and the truth about tech and libertarians” (though, as in the case of Uber, the real political agenda might be in the disguise of a liberal agenda).

And though designers have become highly valued by big brands, the obstacles they face when attempting to do right by customers/users — though you might not think that (fully) reflects true “design activism” — are often strong. As stated by Ball and Dominguez in the July issue of Touchpoint (from the Service Design Network):

“Despite an emerging focus on the role of customer experience in creating and sustaining value, the view that firms exist to serve shareholders, profit and the bottom line remains at the heart of business education, research and practice today.”

And from less than a week ago in “Have Designers Lost Control of Design?”:

“More than ever before, designers are sitting on the C-suite of companies. Large corporations are investing in design because it makes good business sense, both through hiring and through “innovation labs” that have become a crucial part of how companies grow and adapt. But as design has become integrated into the heart of companies, [Matt] Webb believes there has been–ironically–an unintended consequence. Designers themselves, beholden to business interests that demand the most optimized, most persuasive version of something as opposed to the most useful and helpful for the user, have decreased agency.”

But in the follow-up two days later:

“Designers have always ceded control to client interests. Empathy has little relationship with who holds the power on making the final decision on an idea or product, strategy, or plan. The larger question is, has design ever been ethical? If one is to define ethical as prioritizing the user’s needs over the client interests of profit, then no. As a profession, we should be clear that at best we put community interests at parity with client interests. Until we remove the paying client it will never change. Design is inherently an unethical industry.” — E.M. Cioran

Interestingly, that was at the heart of the disagreement that arose on the SF Design Week panel.

I love the words you quote from more than two decades ago from Katherine McCoy (which I repeat here for emphasis):

“We must stop inadvertently training our students to ignore their convictions and be passive economic servants. Instead, we must help them to clarify their personal values and to give them the tools to recognize when it is appropriate to act on them.”

I think AC4D does this well, perhaps in no small part due to the theory courses you’ve included in the curriculum. I wonder whether most other design education programs do this nearly as well.

Thursday, August 10, 2017

Are designers becoming the new activists?

A version of this post has been published on Medium.

“Why is this question being asked these days?” inquired designer/researcher Sarah Fathallah during her remarks on a panel during San Francisco Design Week with the same title as this post.

Indeed, seeking an understanding of the reason for the question is a great place to start to address it. The question itself — “are designers becoming the new activists?” — was among several questions appearing and reappearing in a carousel at the top of the SF Design Week website, but I chose to assemble and moderate a panel on this particular question, because I think it is of significant importance (as I will explain).

To me, basic human-centered design, which I’ve practiced and taught and facilitated and overseen and written about and … for many years, is already a form of activism. How can a design process committed to, in some way, involving the humans to be affected not be viewed as such?

We believe that the human condition is increasingly challenged by poor experiences. IxDA intends to improve the human condition by advancing the discipline of Interaction Design.
Isn’t that mission a commitment to activism via design?

Julie Anixter, Executive Director of AIGA, explicitly encourages designers to reframe their careers to be activists (see a slide from her talk below).


And what of various reframings of human-centered and interaction design that are increasing in popularity? For example, “co-design” greatly increases the role played during the design process by the humans to be affected, arguing that such increased involvement improves the outcomes of the process and empowers those affected to help shape their own future. Much the same can be said of many implementations of “design thinking” and is extended via additional reframings such as “design through collective action / collective action through design.”

And there is “purpose-driven design” and “inclusive design” and…

…and, of course, (overlapping with all of the above) “social impact design.” According to designer Ana Marques:
For instance, facilitating and improving the channels on how expats can vote online; changing the way citizens experience their daily commutes with up-to-date information in the transportation hubs; or even brainstorming with local communities to increase and improve accessibility for disabled citizens during major events, is the ultimate activism. By being involved within the (re)design of services, designers can in fact make a difference in the lives of people, creating the space for engaged citizens and a more aware, intelligent and sustainable society. 
Designers are increasingly drawn to work on projects intended to have a positive social impact. And there are an increasing number of firms entirely focused on such work or that have found ways to participate in or support at least some of this type of work.

And there is Code for America


…and 18F and USDS and…

…and on an increasing number of college campuses, Design for America, and…

“Design activism” is even a category of activism now. According to Design Indaba:
Design activism uses design thinking to create products, environments, solutions or services that enhance quality of life for the other 99%.
But all design has social impact, and an increase in calls for design ethics reflects acknowledgement of that. Mike Monteiro’s recently published “A designer’s code of ethics” includes, “A designer is responsible for the work they put into the world,” “A designer values impact over form,” and “A designer owes the people who hire them not just their labor, but their counsel.” (See also Monteiro’s “Ethics can’t be a side hustle.”)

One day, while on the New York City Subway I looked around and counted. Six of the ten people in my line of sight were on some kind of device. I mentally scoffed, annoyed at their inability to resist the call of their digital worlds. 
That’s when I realised that I was—we all are— part of a problem. As an information architect, I play a major part in leveraging the motivations and creating the systems that suck these people into the digital realm. 
I’d not ever seriously considered my own UX work having a negative impact on my fellow human end users. After all, I was there in the meeting rooms each day, fighting the good fight, ensuring that the products and services my teams were creating supported users as best they could. How could my work result in this digital zombie world? 
Then I reminded myself of all the projects I’ve worked on where the goal was to increase clickthroughs, to get the user to stay on the site for longer, to gamify a process and bring the user back into the app again and again. Oh, I had absolutely played a part in creating the scene before me. The question was, did I like the world I was helping create?
The birth of an activist, no?

I like these trends, though Ian Bogost adds some words of caution:
…contemporary designers believe they are reformers. Agents of change. It could be social or political change. It could be aesthetic or cultural change. It could be the selfish change of professional aspiration and its related station. It could be the change associated with progress. Designers are ambitious sorts of folk—arrogant, even—and none would want to be associated with stasis, or even with mere cyclicality. What a waste, just to mow lawns or brown bread every day! Let us instead reinvent lawn care! Let us reinvent breakfast!
But wait! Isn’t design SUPPOSED to be neutral? No, cried designer Ethan Marcotte (and others) in response to designers’ justification for designing a beautiful, sustainable border wall:



(See also Marcotte’s “The bricks we lay.”)

So, the panelists — remember that panel I mentioned at the start of this post? — must have all agreed that designers are becoming the new activists, yes? A tweet later that evening from panelist Sarah Fathallah suggests otherwise:


Let’s look at the perspectives of each of the 5 panelists.


I’ll start with perhaps the most controversial panelist, Dan Makoski, VP of Design at Walmart (who appeared via Skype from Bentonville Arkansas). Indeed, Dan’s inclusion raised a few eyebrows before the session; for example:


But Walmart is dramatically changing the way it does business (see, for example, “Business exists to serve society”), and I wanted to learn how or whether designers are contributing to that change.

According to Dan, when Dan was interviewing for the VP role, the Walmart board agreed to his insistence that his design goals would include measures of customers living better as part of an effort to transform the way the world saves money. With an unparalleled commitment to co-design and “creating a culture of bold risk-taking for good,” Dan agreed that designers are becoming the new activists and said to look for more evidence of that being true at Walmart in the future.

Panelist Kendra Shimmell, Head of Service Design at Adaptive Path @ Capital One, spoke passionately about the designers’ role in helping “the voice of the people” to be heard, “changing the system from the inside out,” and “turning problems into causes.” Though designers are still laying the groundwork for significantly impacting the nature of services provided by Capital One, Kendra spoke proudly of a new service they’ve designed called “money coaching” (see Kendra’s slide below)…


… and of their efforts via BarnRaise to “harness design methods to tackle local social problems.” Kendra believes that designers are activists.

Panelist Shane Zhao, Product Manager for OpenIDEO, described IDEO’s open innovation platform that was created “to put the power of human-centered design into the hands of many, harnessing the diverse skills of people from all over the world to spark innovation where it’s needed most.” (See Shane’s slide below.)


Shane agreed that designers are becoming the new activists.

However, panelists Jazmyn Latimer and Sarah Fathallah (referenced earlier) voiced a difference perspective.

Jazmyn is Lead Designer & Researcher on the Safety and Justice Team of Code for America. Her work there has included starting up the project “Clear My Record” that helps people apply online to clear their criminal record in select California counties, so that they can qualify for employment, housing, and other opportunities where having a criminal record is a restriction.


Sarah is a freelance designer and researcher passionate about applying human-centered design to tough social and development challenges. She has worked with Fortune 500 clients, government entities, and non-profits such as Internews, Bread for the City, Safe Horizon, and Democracy Works on topics ranging from financial inclusion and consumer protection, to healthcare, and civil and human rights. With Mollie Ruskin, Sarah recently started a job board for those looking for “design gigs for good.”

Jazmyn and Sarah both argued that it isn’t the job of designers to be activists. Activists have committed to a solution to a problem and engage in a variety of activities to see that that solution is implemented. Designers, on the other hand, (are supposed to) approach a problem with no solution in mind, and, ultimately, (should) only advocate for whatever solution emerges from a design process influenced by a multitude of constraints.

According to Jazmyn, when you think of activists, you think of Martin Luther King, Black Lives Matter, …; you don’t think of designers. Again, according to both Jazmyn and Sarah, it isn’t the job of designers to be activists. And according to Jazmyn, everyone with whom she discussed this issue at Code for America agreed.

Hmm… 

Their position seems to be consistent with good design ethics, no?

Hmm… 

But… But…

So what is answer? Is it better to ask in what ways and when should designers be activists, and in what ways and when should they not? Should we (additionally) be asking how or whether activists are designers and how we might or need to learn from them?


I believe that the answers to such questions have significant implications for good design practice and good design education, particularly in view of the trends I outlined earlier.

I’ve discussed these issues with others since the panel and will be doing so with additional people, including a large group of new UX designers in San Francisco tomorrow. I also hope to discuss these issues at SXSW 2018, to which I submitted a proposal for an extension of the panel described above.
I ask two things of you, the reader of this post:

1) vote for the panel at http://panelpicker.sxsw.com/vote/71362 and encourage others to do so as well;

[Part of the process of selecting panels from among the many hundreds of submitted proposals is a public voting process that runs through August 25; the SXSW panel (which is constrained by rules to fewer participants) will feature myself, Sarah, and Kendra from the SF Design Week panel along with Ruby Ku, Director of the Austin Center for Design, an educational program via which “students learn to recontextualize design in the space of large-scale wicked problems.”]

2) share your views by sending them to me or by authoring comments below about this post.

I hope to hear from you and/or see you to discuss or debate these issues in person at SXSW 2018 or elsewhere.

Wednesday, July 12, 2017

The dilemma of empathy in design

A version of this post has been published on medium.

Can you be or get too close to a situation or group of people to design effectively for it or them? Or is being fully in that situation or group of people beneficial, perhaps even essential?

Don Norman and Roberto Verganti are among those who have argued that “the more that design researchers immerse themselves in the existing context, the more they ... are trapped within the current paradigms,” making it difficult to imagine, let alone design, a paradigm change when such might be needed.

About 10 years ago, I worked on a project for a new system for people with diabetes. We talked with many people who had diabetes or who helped educate diabetics. I even wore an insulin pump around for several days. In short, we were building up subject matter knowledge and empathy for the people we were designing for. During this user research phase many of us (myself included) started to have actual nightmares that we had diabetes. I remember once looking at my toes, wondering if the tingling I was feeling was the onset of diabetes. (It wasn’t — probably just my foot was asleep.) We’d empathized to the point where we really identified with diabetics and their problems, which are considerable. We had so much empathy for them, in fact, that for several weeks, we couldn’t solve the problem. It seemed intractable, given what we knew about the condition and the state of technology at the time.
But Emily Pilloton, in an article entitled, Depth Over Breadth: Designing For Impact Locally, and For The Long Haul, wrote:
For design within communities, we must genuinely identify with the community and consider ourselves part of it in order to produce solutions that are informed and long lasting in their impact. Through such empathy, our actions become inherently collective, making more permanent impact. This power of collective action was beautifully described in a 1994 white paper published by the South African Government’s Rural Development Program committee: “…The people must together shape their own future. Development is not about the delivery of goods to a passive citizenry. It is about active involvement and growing empowerment.” 
I am entirely convinced that our greatest successes have and will come from work that is local, deeply entrenched, long-term, and in our own backyards. I firmly believe that lasting impact requires all three of the following: proximity (simply being there, in the place you seek to design with and for), empathic investment (a personal and emotional stake in collective prosperity), and pervasiveness (…involvement that has impact at multiple scales).
On what was this view based?
(After more than a year) bouncing between projects, constantly having to shift gears between cities, user groups, research sets, prototypes, and team dynamics… we began working closely with a single school district: the Bertie County Schools in Eastern North Carolina. Bertie County is the poorest county in the state, with close to 80 percent of its school district’s students living in poverty. Since the partnership’s start (a year ago, we) have spent nearly half our time in Bertie, building educational playgrounds, designing new computer labs, rewriting entire curricula, and implementing countywide education campaigns. 
What we quickly discovered was that being there, as citizens, rather than just designers, was 80 percent of the battle. By becoming immersed in the community, cheering at high school basketball games, and weighing in at board meetings, we have earned the trust and partnership of the school district’s teachers, parents, and students, making our work more personal, appropriate, responsive, and meaningful. Gathering feedback from the community happens more smoothly, the ability to prototype and experiment with new ideas is more fluid, and a public understanding of our process has become more common. All the capacities required by the design process have become more natural through face-to-face engagement and open communication with the community, which of course, requires us to be there. 
Where wide-scale endeavors fall flat is in their cursory understanding and lack of long-lasting commitment to the communities they serve. It is only by becoming a member of a community… that we can truly understand the issues and produce sustainable and effective solutions.
Jon Kolko addresses part of this when he states in, Wicked Problems: Problems Worth Solving, “It may take weeks of observation to become aware of the intricacies of tacit knowledge in other people, which a short-term project-based approach to design doesn’t provide.”

And contributing to this is, as George Aye stated recently, the role of an imbalance of power between designers — who, when they “work on complex social sector issues, …often enter situations with power inherently given to them (even if they don’t realize it)” — and the “communities being served”:
For all the talk about being human-centered, one very human factor often gets overlooked — a basic understanding of how power operates in relationships between people. This lack of understanding by design(ers) results in wasted funding, poorly prioritized projects, and broken promises to the very communities that are being served.
Chelsea Hostetter, in an article with the title that I stole for this post, reveals that already being a part of the community to be served isn’t enough:
Alex and I were embedded into the trans and queer community of Austin, and it’s really hard when you’re part of the LGNTQ community and also talking with members of that community about their needs to not feel like you want to take action right then and there. There were a lot of emotions I felt around the research that was just difficult to process as a queer person myself. 
The Transgender Day of Remembrance is an event held for the community to remember the lives of the transgender victims of homicide with that year and to communally grieve. So throughout all of our interaction with the trans and queer community, the underlying ribbon we found is that somebody usually knows someone who has died whether through murder or through suicide. It’s tragic, and it’s awful, but that is the day to day of our community. As I was listening to the many names called out of lives lost that year, I started sobbing. Watching one person grieve is harrowing, but watching an entire community grieve, and feel connected to people you haven’t even met, is something that is completely, deeply, and soulfully impactful. At the time we dove really deep into the research but it struck a very deep, dear, personal chord with me. I previously considered myself a member of the queer community but through that research, I realized that I hadn’t been a good ally of the trans community like I previously thought. I didn’t have enough information or empathy to properly support our trans community then. 
I don’t think that (the app we designed for the queer community when we were students at the Austin Center for Design) would have worked in the state it was in (then) because I wasn’t as embedded in the queer community as I am today. I am now a regular member of several queer community meet-ups and work with an internal group at frog that promotes diversity and inclusion. I realize in my specific case, in order to be helpful and beneficial and really design for that community, you have to be embedded in it. In my current position within the community, I feel far more able to help people.
The following recent tweet and the top of the article it points to is of relevance…



…as is April Starr’s tweet which she composed shortly after she and her husband endured a terribly designed process of rounds by doctors and residents during her husband’s hospital stay:



I’ve been marginalized professionally and through a health crisis and a healthcare nightmare (and as a result, a long stretch of homelessness). Does this make me better suited to design for diversity and for healthcare (and for the homeless) than designers without that experience? I think so; in fact, I think it even makes me better suited to work on other social issues of great complexity. [But does this mean I wouldn’t need to further connect with people in non-diverse, the healthcare, or the homelessness ecosystems and engage in or otherwise tap (additional) design research when designing for healthcare and for the homeless? Not at all.]

If one hasn’t had such experiences, is one ill-suited to work on such issues? I don’t think so. As Tina Seelig writes, everyone experiences “challenging character building opportunities” during one’s life that facilitate one’s ability to develop empathy for those whose character building opportunities are more challenging. And by embedding oneself in the community to be served as much as possible, as described by Emily Pilloton and Dan Saffer and Chelsea Hostetter

Is all of this only of relevance when addressing “wicked problems” (i.e., social issues of great complexity)? 

And what of Norman and Verganti’s caution about becoming trapped by the current paradigms the more one immerses oneself within them? What can one do to not become trapped? Dan Saffer’s continuation of his story of developing too much empathy for diabetics:
It wasn’t until we were able to step away from the diabetics’ perspective and become less empathetic that we were able to come up with a product concept. We needed distance — a psychic removal — in order to really assess the problem and take action to change it. In other words, we had to act like designers, which meant we had to be more objective, to sit outside and to the left of the problem space. As this experience taught me, too much empathy can be as crippling as too little. 
Empathy will get you to see the problems from the users’ perspective, but not the solutions.
Do you think Emily Pilloton and Chelsea Hostetter would agree? Would George Aye find this imbalance of power to be unacceptable?

Questions, questions… (Indeed, I addressed the content of this blog post — and much more — during a session entitled, “Question Everything: Workshop to Help You More Effectively Design for Social Impact” which I led with Susan Wolfe last month during San Francisco Design Week. Should you be interested in such a workshop, give us a holler.)

Sunday, May 14, 2017

Applying anthropology, design, and theory to medical education and medical practice

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).

A bit more from the Good chapter:
"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.