Design Thinking for the Greater Good

by Jeanne Liedtka

  “When the people we support would like a cup of tea, it is probably faster for the caregiver to make it for them, but this encourages learned helplessness,” Colum told us. “We want to create a program for those we support to start doing things for themselves. Don’t make a cup of tea for them; help them make a cup of tea. Help them make a sandwich.” The idea was to support them by breaking the task down and, through an understanding of what helped or hindered an individual autistic participant, to redesign the steps by building on the person’s sensory preferences and strengths to do just that.

  It became clear to the design team that these everyday activities involved a series of steps, each with a potential draw or obstacle. If the obstacle could be understood and removed, or an interest added, the task might become more attractive. “Pinpointing which part of an activity the autistic person finds difficult, and detecting where in an activity a person may need extra prompts and support, helps identify what needs to be adapted or designed differently to complement a person’s capabilities,” Katie explained. For example, if a person dislikes a toaster because the toast pops up without warning, someone might be able to time the popping to give a warning indicator of when it will happen. A small thing like setting a timer could solve the challenge and facilitate the task.

  For the daily activities project, Katie drew on research to create a taxonomy of interests. An illustration of a tree was used to visualize the interests of each autistic participant. Each color-coded branch represented an area of interest. Leaves on each branch reflected a specific individual’s interest in that area, such as dancing on the sports branch, music on the creative arts branch, or radio on the machines branch. With some branches covered in leaves and others fairly empty, each tree clearly showed a visual snapshot of that person’s specific interests.

  A tree representing the interests of an autistic participant. Illustration by Katie Gaudion.

  The Kingwood story drives home the power of empathy. For most of us, a washing machine is a machine that we use to wash clothes. We rarely consider it from the perspective of sensory inputs, and if we do, we likely pay little attention to those thoughts and reactions. If a washing machine is noisy, we get annoyed and we move away until the cycle is done. Perhaps the next time we buy a machine, we will purchase a quieter model. But for someone with autism, the sensory inputs from everyday objects and the environment can have a tremendous impact on daily life. As we’ve seen, a washing machine can potentially be a source of enjoyment as you watch the clothes spinning. A toaster, on the other hand, might cause serious distress. The distant sound of a car engine can be like a gong clashing in the same room.

  For a “neurotypical” designer to truly see through the world through the eyes of an autistic person is a significant challenge—even for a designer already committed to empathy. Direct observation can be a powerful design tool.

  Katie described one of the moments of insight that came early in her work, as she first observed Pete. The first time Katie visited Pete at home, she saw him involved in a series of seemingly destructive acts—picking at a leather sofa, ripping a magazine, and creating indentations in a wall by rubbing against it. She focused on documenting Pete’s behavior and wondered how she could help to design solutions that would prevent it in the future. But, on Katie’s second visit to Pete’s house, she elected to mirror Pete’s behavior and discovered, to her surprise, the sense of sensory enjoyment that came from ripping paper, flipping a magazine, picking at the leather on a couch, or holding an ear against a wall. Unable to ask Pete directly what he liked about doing these things, Katie mirrored his actions and experienced it for herself:

  Picking the leather off the sofa was surprisingly satisfying and could be equated to the satisfaction one gets from popping bubble wrap. So, instead of a ruined sofa, I now perceived Pete’s sofa as an object wrapped in fabric that is fun to pick. Pressing my ear against the wall and feeling the vibrations of the music above, I felt a slight tickle in my ear…So, instead of a damaged wall, I perceived it as a pleasant and relaxing experience.

  THE DIRECT OBSERVATION TOOL

  While ethnographic interviewing is likely to be the most used design tool, direct observation can often yield crucial insights that merely talking to people does not. The responses we get when we ask people about their behavior have biases and limitations. Direct observation helps us learn more about the discrepancy between what people say and what people do, what designers call the “say/do” gap. In ethnographic observation, we step into the “native habitat” of those we want to learn more about and try to capture the full context, without interpretation or judgment. This is not easy to do, as Katie’s description of her observation of Pete reflects.

  On her first visit to his home, Katie had used her own frame of reference and labeled Pete’s acts as negative and destructive. On her second visit, she began to truly empathize with Pete—the sofa, wall, and music revealed vital clues that helped her understand the things Pete liked to do. She explained, “I thought empathy was innate but now realize that it can grow and evolve. For this to happen…it requires a perceptual shift in thinking that is open to different ways of being in the world.”

  Co-Creating What if

  As the design team moved from exploring What is to generating new ideas in What if, they kept in mind this understanding of sensory preferences, interests, and capabilities, and they facilitated co-creation workshops to generate design concepts for the garden project. Support staff and family members were invited to imagine what a shared garden space might look like. A paper representation of a rectangular patch of grass and cards that showed possible garden features, such as furniture, flooring, partitions, and activity ideas, were given out. The participants were also given stickers representing the autistic person they support, and they were asked to place them in areas of preference, giving the team an idea of what features might be expected to be popular.

  The result was a visual representation of a garden, showing the desired activities in various spots on the patches of grass and a sense of who would likely spend time in the various activity areas. The co-creation workshop quickly gave the team a sense of popular and recurring themes. The exercises were engaging and useful because they tended to allow for spontaneous and revealing conversations. Although the garden was being designed for adults with autism, it became clear that the garden space would be an area for all to enjoy time together, including staff and family members.

  The final garden design included seven different activity spaces: escape, exercise, occupation, sensory, social, transition, and wilderness. “Escape” recognized the need for solitude, calm, and quiet, and “sensory” recognized the influence of sensory experience and the effort to use it to positive effect. For example, specific sensory spaces were designed to reflect sight, smell, sound, and touch. In addition, the activity spaces were designed to be separate and compartmentalized, to help the residents transition between these areas of activity. This design would allow for individual preferences and interests and would facilitate change and acclimation. Spaces closer to the house were purposely designed to be more ordered and to be static and unchanging (with plants and trees that do not change with the seasons), for those who do not like change. Areas farther away could include more seasonal change and less order. The garden was designed to provide low sensory input at the entrance and to allow more sensory exploration the farther one went into the garden. This arrangement helped to balance a person’s hyper- and hyposensitivities.

  Final garden design.

  To accommodate those who did not like to get dirty but who might still like to garden, raised planter boxes were designed to allow for gardening activities that are not too messy or challenging. The exercise space was floored with rubber mulch, and foliage lining the fences helped to dampen the noise from other garden areas. The sensory areas were divided to allow for a focus on one sense at a time. Using the sensory preference cards, some residents expressed a preference for jumping, so a t
rampoline was considered as a potential addition. Escape spaces offered seating with privacy, while the social space included an outdoor classroom in the garden center. These activity spaces, which came out of the co-creation sessions, were used to develop the final concepts.

  During co-creation sessions for the daily activities project, a member of the support staff noted that many residents liked bubbles and found using a vacuum cleaner challenging, so one idea offered was to link the enjoyment of bubbles to the task of vacuuming to make it more enjoyable. Katie developed the idea of attaching a spinning disk to a washing machine to enhance the enjoyment of those participants who liked spinning objects. By recognizing strengths rather than deficits, support staff became better able to help the residents do the tasks that played to their strengths and to manage obstacles that might otherwise get in the way. As Katie noted:

  The support staff were really key, because they were the interpreters and the mediators and they hold so much information about the person they support. But they almost did not realize that themselves. So a big part of the design process was creating a platform for them to be able to share and express their ideas with each other—and explore ways in which they themselves can generate new ideas about the person they support, making it less abstract and more concrete and tangible.

  Prototyping What wows

  Hands-on activities were an important part of the Kingwood design process. The team developed “Ready Steady Make” workshops that pushed exploration further through the use of prototyping. In one of these workshops, Kingwood support staff turned cheap and easy-to-find materials into personalized garden props. These sessions allowed staff to consider the people they supported in terms of their sensory likes and dislikes and to share and communicate experiences and ideas. Although these interactive workshops, in which staff are considered experts and learning is facilitated collaboratively and creatively, first met with some cynicism, they became very popular as the staff enjoyed being creative and thinking about the people they supported. The sessions continue to be provided on an ad hoc basis.

  For the daily activities project, another Ready Steady Make workshop was created to allow a mix of newer and longer-term support staff at Kingwood to share their ideas and experiences. They first created paper storyboards of the residents’ activities (staff drew step-by-step stories on paper, using stick figure drawings with captions) and then expanded them into three-dimensional theater sets (using creative, three-dimensional representations of the activities).

  Also in this stage, two different prototypes were made of a bubble-blowing attachment for the Henry vacuum cleaner (appreciated by many residents for its cheerful appearance), to link bubble blowing with the task of vacuuming. One of Katie’s learnings was around the particular nature of the prototypes she needed to create:

  I’ve learned that my prototypes need to be detachable and be destroyable, because sometimes the only way that residents can communicate that they do not like something is to destroy it, to get rid of it. And I am glad that they are able to do that, because that is the clearest indication that they did not like it.

  Testing What works

  An important part of each of the design activities, after idea generation, was evaluation and testing. After the garden was developed, for instance, the team created a visual evaluation form for staff and the person they support to go through, after each use of the garden, to determine how the garden was being used and what the response was. What time of day was the garden used? What was the weather like on that day? What areas were being used? What was the reaction to the space? What did you like and do? Positive and enjoyable got a happy face. Negative and unenjoyable resulted in a frown. The data gave the team a sense of how the garden was being used and how the autistic participants felt after using the new garden.

  The challenge of measuring outcomes at Kingwood is perhaps even greater than in other situations—here the users of the design cannot easily express their likes and dislikes. In some ways, the response of the staff has been the clearest sign of impact, as they have moved from skepticism to enthusiasm for using the design tools.

  The tools developed at Kingwood have the potential to have an impact on many projects involving people who are neurologically diverse and are being adapted for use with other populations. For example, in Boston and New York, therapists are now experimenting with the use of the sensory preference cards with people who have dementia.

  Reflections on the Process

  Kate Allen, who succeeded Sue Osborn as chief executive in 2015, reflected on the importance of understanding the why behind Kingwood’s continued commitment to innovation and the way in which the use of design thinking had invited the entire organization into the process:

  It’s our employees who are working with someone with autism on a day-to-day basis—they’re the ones that really make the difference. They are the ones that have the power to make so much difference in that individual’s life. And so that member of staff needs to understand and be part of Kingwood’s passion—they need to understand why we’re doing it. They need to see the benefits and they need to know it can positively impact the person that they’re working with right now. Initially, it was an effort to get people to come to the design workshops, because they didn’t know what the purpose was. They didn’t see why Kingwood was doing these crazy things. You have to link your design idea with a real benefit. It has to be real and tangible to the entire organization. Then they will see the benefit of what we’re doing, and then they’ll buy in. We’re now entering our seventh year of research. And ideas move both upward and downward within the organization. We’re all listening to each other.

  Kingwood shows us the importance of framing new questions, involving new voices despite the challenges of doing so, and adapting tools like cards and props, in creative ways, to make their input meaningful. It is ultimately impossible to put ourselves in the minds and bodies of another person, but we can make tremendous strides in engaging others and increasing our understanding of their experience by using design thinking tools. But, as Katie notes, this requires shifting our perception. Making sense of the preferences of others is possible if we reserve judgment, question our assumptions, and allow exploratory research and prototyping to offer new data and understanding. As we see at Kingwood, even with adults with autism who have limited speech and additional learning disabilities, we can develop a valuable understanding of individuals’ experiences through ethnographic research that involves them, their families, and support staff, so that we can work with them to achieve a greater good, making their lives more active and fulfilling.

  While the Kingwood story highlights one of the most challenging situations for engaging stakeholders in the design process, in reality, most people have limits in their ability to clearly communicate their own needs. Here lies the promise in the difficult act of committing to deep discovery as a prelude to idea generation. The creativity of the Kingwood project team is perhaps most evident not in their eventual solutions but in their ability to surmount obstacles to learning that might have deterred most of us. It demonstrates what is possible when we engage a broader set of voices—when we offer those we design for the opportunity to co-create with us and participate in the design of their own daily lives in a meaningful way.

  CHAPTER FIVE

  Scaling Design Thinking at Monash Medical Centre

  THE CHALLENGE TO THE GREATER GOOD

  Challenges in the social sector often live at the systems level. Yet organizations are often collections of siloed specialists who find it difficult to talk across their differences. How do specialists who control different pieces of a system come together to take action on critical problems? Nowhere is this dilemma more apparent than in health care, where the complexities of the system and deep-seated differences can stymie urgently needed organizational reforms.

  DESIGN THINKING’S CONTRIBUTION

  Imagining a new future together across difference starts with seeing today in a new wa
y. Design thinking brings potent tools to drive this kind of alignment around What is at a systems level. The medical staff at Australia’s Monash Medical Centre demonstrate how human-centered design can help clinical specialists with differing perspectives align on what matters most. As a university medical center in an urban area, Monash faces many woes characteristic of health care institutions today, from the macro—an aging population, lengthening hospital stays, increased reporting requirements—to the micro—the difficulty of getting people to wash their hands. At Monash, these troubles were exacerbated by critical internal challenges around staff engagement, low levels of patient satisfaction, and turnover of the entire senior staff. As part of a multipronged effort that combines design thinking with systems thinking and operations research, clinicians at Monash are mastering design thinking methodologies and working together to make the entire institution more innovative and patient centered.

  Monash Medical Centre in Melbourne, Australia, is demonstrating that health care clinicians and staff can lead the way in innovation and bring an entire organization along with them. There, Dr. Don Campbell, professor of medicine, and Keith Stockman, manager of operations research, have reached across professional boundaries to mobilize teams of colleagues in an approach they call “systemic design thinking.” The HealthCare InnovationbyDesign initiative they founded in 2012 is attacking an array of health care challenges as diverse as extended patient stays, hand hygiene, and mental health. Across projects, they are united around two common beliefs: first, that new ways of thinking about health care delivery must focus on patients’ experiences and their interactions with frontline health care delivery teams; and, second, that these teams must be involved in any transformation. Change, the Monash team believes, must attend to people, process, and systems, including the role of human emotions. In particular, an appreciation for the power of the larger system to drive both intended and unintended behaviors and outcomes is critical.