How Top Designers Connect with Patients

The second post in a series on Designing for Clinical Empathy

There are moments as a patient when you feel understood. It might be as routine as ordering a rushed prescription renewal through your smartphone on a busy day or as monumental as a team of clinicians working around the clock to ensure a safe and sound birth. These moments rarely happen by accident — they’re carefully designed by passionate people and supported by complex systems.

In my continued quest to bridge design and healthcare toward a system that works for patients, I asked four of the most talented medical designers I know:

“How do you design for clinical empathy?”

Read perspectives from a patient-centered clinician, a digital designer, a health systems designer, and a device designer — and chime in with your own!

Diabetes conversation cards used as participatory design tools with patients

Dr. Joyce Lee: Focus on patient goals, not features

Joyce Lee, MD, MPH, is a pediatrician and diabetes specialist at the University of Michigan. She is also a researcher, designer, and founder of HealthDesignBy.Us, a community passionate about patient-centered participatory design.

With every clinical encounter, physicians are designing an experience, and I look to design methods to help me improve that experience. Two particular approaches have been useful for me.

Firstly, I embrace “goal-directed design,” an approach pioneered by Alan Cooper, for each clinical encounter. What life goals do my patients have, and how can we design a diabetes care plan to help them achieve it? Patients who are athletes want peak performance, which leads to conversations about managing snacks and insulin during athletic events. Parents of toddlers with diabetes who spend endless nights checking sugar levels need sleep, which leads to a conversation about sharing the responsibility with other family members or using a continuous glucose monitoring system. Diabetologists tend to focus on features — blood sugars, insulin doses — but goals allow for collaborative problem solving.

Diabetologists tend to focus on features — blood sugars, insulin doses — but goals allow for collaborative problem solving.

I also like to use design artifacts. For example, I often use the diabetes conversation cards above in my clinical encounters. When I enter the room, I give my patients the stack of cards and ask them to pick their top 3 topics of conversation for the visit. I have found them to be an incredibly effective tool to break the ice and foster a meaningful exchange, even with the typically silent teenage boy. I also bring blank cards with a Sharpie for the write-in option, which helps me understand patient problems and needs I have yet to imagine.

Kay Jamieson has a lovely quote: “Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination.” Design methods create opportunities to ask the right questions.

Omada’s Prevent app and scale for people at risk of chronic diseases

Jesse Silver: Change behavior by listening

Jesse Silver is the VP of Product at Omada Health, which creates ‘digital therapeutics’ to inspire lasting behavior change in people at risk of chronic disease.

In clinical settings, behavior change is often described as a linear journey from “precontemplation” to “preparation” to “action.” In real life, things are messier. People may experience progress, slip back into old habits, then need support to get back on track. Slow results can be discouraging, but any life-changing journey has ups and downs, motivation and stagnation, hope and discouragement.

At Omada, this is the journey we’re obsessed with. Our first product is a 16-week program called Prevent (which includes an ongoing support phase called Sustain). It’s designed to help people adopt healthy behaviors that allow them to lose weight and lower their risk of chronic disease. We do that not just by guiding participants through lessons and engaging them with online and offline tools but also by providing the empathic support of a health coach and a small group of peers.

We know that behavior change doesn’t happen when our participants are logged in. It happens out in their day-to-day lives. It’s empathy that allows our designers and coaches to look beyond the moment and to the realities of what the next day, week, or month will bring. Without it, we run the risk of providing insensitive advice, which falls on deaf ears and destroys trust.

We know that behavior change doesn’t happen when our participants are logged in. It happens out in their day-to-day lives.

Empathy comes in countless forms: it’s the “intangible” stuff like supporting a person emotionally and the “concrete” stuff like helping someone on the nightshift figure out what to eat for dinner. Empathy can’t be approximated; it has to come at the right time and be delivered in the right way. That’s why we require participants to fill out a seven-page questionnaire, which their coach uses as a starting point for understanding who they are and where they’re coming from. (Wondering about the drop-off rate of such a long questionnaire? It’s almost none — participants want to be understood.)

We believe in and rely on the power of data to help adapt our program for each participant, but we don’t believe computers alone can understand a person. It takes a human — an empathetic one — to know which questions to ask and which responses to focus on when guiding someone through a journey that’s as messy as it is meaningful.

A screen from a video produced by Cleveland Clinic encouraging empathy in hospitals

Stacey Chang: Create systems that inform empathy

Stacey Chang is the Executive Director of the Design Institute for Health at UT Austin’s new Dell Medical School, bringing a design approach to Austin’s new health ecosystem. He’s formerly Managing Director of IDEO’s Healthcare practice.

Improving clinical empathy is hard if all you do is browbeat practitioners into doing it better. You need to develop supporting mechanisms in the environment or process flow to help the staff recognize the unique challenges of each patient.

Creating tools to reveal insights that inform empathy is a more systemic approach to increasing it. Here are two examples from my work at IDEO:

Creating tools to reveal insights that inform empathy is a more systemic approach to increasing it.

Cleveland Clinic struggled to deliver Western-style medicine in the Middle East because of the way patients and their families would respond. Patients were admitted into a traditional patient room (bed on one wall, surrounded by equipment), but when the nurses arrived the next day, they would find that the patients’ families had rearranged the furniture, moved in, and established residence, much to the chagrin of healthcare professionals. Cleveland Clinic didn’t appreciate that in a Bedouin culture this was how families cared for their loved ones when sick. To disrespect that tradition was to challenge what locals deemed quality care. Cleveland Clinic hired IDEO to develop a patient experience with touchpoints that addressed unique cultural needs — for example, by providing food services tailored to families. The new approach surfaced nuances in the patient’s backstory and revealed expectations throughout the experience so the burden of building empathy didn’t fall on a single practitioner.

The second example, from a project with Kaiser Permanente, addressed gaps in communication at nurse shift changes. The shift change is the genesis of a large percentage of medical errors because it is hard to transfer every bit of knowledge. One outcome was a bulletin board in the patient room in the maternity ward with a simple set of tiles hung on hooks. Each tile represented a milestone to complete before the patient could go home with her newborn — things like immunizations and filling out the birth certificate. When each milestone was completed, its tile was flipped over to mark it complete. Shift change handoffs would now occur in front of the board, a physical reminder of the patient’s status. And the real secret was that conversation was happening in front of the patient, who could chime in to fill in gaps.

Parts from a device kit assembled at a clinic in Nicaragua

Jose Gomez-Marquez: Design for possibilities, not optimization

Jose Gomez-Marquez is a DIY medical device designer. He founded MIT’s Little Devices Lab to create empowering technologies for health and MakerNurse to collect stories from inventive nurses across the US.

“She wants to do back flips like the other kids on the swim team without her mom having to announce the end of the lane.” This is from a conversation with a mother about raising a daughter who was blind.

Immediately, we began brainstorming possibilities, and I was confident we would find an approach. While I tried to assemble a crack team of engineers between semesters, I slowly fell back on our constant realization in the lab that we don’t have all the answers. Empathy is not something that resonates with me as a driving force; it relies on having an entangled connection with someone. In our lab, we create tools to allow people to experiment.

Last spring, we created an experimental class at MIT’s Institute for Medical Engineering & Science called HST MakerLab. The goal was to create kits that would enable patients to solve their own problems. This girl’s challenge was a great opportunity: she was curious and hungry, she had a long-tail request, and it was affecting her wellness beyond the clinic.

The students had to get out of their MIT designer minds to empower their patients in as many design trajectories as possible. That means designing for possibilities, not optimization. It means moving away from a converging agreement with your patient and into a garden of potential experiments where they become the final Principal Investigator.

The students had to get out of their MIT designer minds to empower their patients in as many design trajectories as possible.

We ended up with construction sets to trick out a pool, provide the swimmer with tactile information, and move out of the way as fast as possible. Vertical streamers she could swim through and feel the edge of the lanes, an ultrasonic rangefinder-enabled kickboard, a wearable bracelet with a buzzer — 10 different projects that could be hacked into twice as many. I got an email yesterday from my student and the swimmer’s mom responding not with a “mission accomplished” but with a list of experiments. That’s the closest I can get to empathy for our patients — the notion that they are empowered with the tools to chart their own exploration.

Thanks to Jesse, Jose, Joyce, and Stacey for their thoughtful submissions. This is the second post in a series on Designing for Clinical Empathy, and I would love to explore more deeply with you the roles of education, organizations, evaluation, and technology in this shift in healthcare.