Transforming our Empathy into A Future of Connectedness

Adapted from 2020 Health Experience Design Conference Opening Address.

A colleague gave me a pin recently that says “You have a super power and it’s called empathy”. But these days, I have felt that it’s not a great superpower. Feeling everything, the pain, the fear, the frustration, wanting to help, wanting to change things, and not knowing what do makes me feel helpless. But empathy is STILL a superpower. Through empathy, we unearth human stories and obtain emotional context. Because we feel, we understand, and we are motivated to make change.

Empathy is core to the philosophy and function of human-centered design and can be our guide in driving the change we want to see. There are two types of empathy, cognitive empathy, which involves viewing things from the perspective of someone else and exploring how the solution may meet their needs, and emotional empathy, which involves actually feeling for the person and desiring to improve their situation.

Now, with the COVID-19 crisis, we’re feeling a lot. We’re experiencing the loss of the way of life we knew and the loss of loved ones whom we miss seeing and just being with. We’re experiencing the loss of the ability to plan, the loss of work and the loss of livelihood. We’re experiencing grief, as indicated in the article in the Harvard Business Review titled "That Discomfort You’re Feeling Is Grief.”

Day to day, we’re just trying to cope, trying to survive, trying to get through the day, and the prospect of this crisis lasting months or even a year or two is hard to process. Those are minor struggles when placed within the context of those on the front-line and the enormity of this situation.

In her book On Grief and Grieving, Elisabeth Kübler-Ross identified the five stages of grief: denial, bargaining, anger, sadness, and acceptance.

Those of us who are familiar with grief know that we might find ourselves in any of these stages at any given moment. They're not linear; they don’t last a prescribed amount of time, and they can repeat. They all may occur in the same minute or in the same day, and some may last weeks or months or years.

David Kessler, who co-wrote the book with Kübler-Ross, asked her family for permission to add a new stage to the official stages of grief because she had since died. He wanted to add a final stage called "meaning," in order to take grief and try to make meaning from it.

Our grief and our empathy have given us the motivation to work to improve health and to stay focused on making things better for people – so that they won’t have to experience what we’ve experienced.

We want to put our empathy into action. We want to make an impact, and we want to soak up all of the inspiration and all of the methods that we can so that we’re well equipped to make that happen. We want to make sense of what is happening right now. We know we must do better – as an industry – as a society – as individuals. We are now, more than ever, acutely aware of the need for and value of human-centered design.

It's hard to imagine a world in which we have adjusted our way of life and our health system so that we have this crisis under control or that it has normalized. It may feel premature to envision how we might heal from this crisis, learn from it, and even move in a better direction.

However, we must find a sense of purpose through this tragedy. We must eventually build again. We must continue to be the change-makers in the health system – the people who fearlessly imagine a better way and paint the picture for all to see.

We must inspire bravery in the direction of change. 

We can imagine a better future through purpose-driven design, which moves human-centered design past micro-utility and toward social impact at the systems level. 

First, we clarify our purpose, considering social responsibility and the impact our decisions have – both positive and negative. 

 Then, we design for context through a human-centered and inclusive approach, and we leverage evidence, behavior science, and the psychology of motivation to focus on changing the real-world behaviors that will lead to improved outcomes.

Finally, we identify and work with others who have shared objectives – collaborating across the ecosystem to design for scale and systems-level change.

Purpose-driven design is a process, but it can also be leveraged as the basis for design principles. We can adopt and augment these design principles to imagine the potential futures we want to see, as opposed to the ones that may happen by default.  

About five years ago, Mad*Pow created “The Designers Oath,” which can be used to create a personal code of ethics. A code of ethics makes a good foundation for ideation around foundational design principles.

Below are some guiding design principles that reflect where we currently are and where we could go.

Put People First

It’s clear now more than ever that we must focus upon impact to people first and business second. The clarity of this guiding principle is one of the effects of this crisis that hopefully will remain.

In the past few weeks, we’ve seen both sides of the human spirit come to life. We’ve seen organizations take advantage of the situation, and we’ve seen organizations reach out in the spirit of helpfulness.

If a business prioritizes the wellbeing of its customers, patients, employees, partners, and community over its business activities, then and only then is it forging a path of future longevity. Social impact and business impact are interdependent and form a virtuous circle that lifts us all.

Strengthen Public Health Infrastructure

Those in public health knew we needed to strengthen the infrastructure before the coronavirus hit. Now, it has become brutally evident to everyone that our public health infrastructure is inadequate.

We must ensure that we have a system that supports the health of the population.

Design for Context

Context is so important. In order to design experiences that will be adopted, utilized, and valued, we need to look at the world through the eyes of the people we’re designing for and design with them, collaboratively.

Through participatory design with patients, we learned that the chronic condition management journey is usually very cyclical. It’s when something goes wrong that the person can become knocked out of equilibrium and need help getting back into balance.

Focus on Behavior and Outcomes

Part of designing for change requires a focus on behavior and target outcomes – with a keen awareness of what measure to affect.

With Truth.org's Become An Ex program, we took one of the most successful smoking cessation platforms in the nation and made it even more effective in partnership with them. We knew that a leading indicator for smoking cessation is to set a quit date, and that became one of our focal points in design – guiding people to set that quit date. People can now take advantage of this solution to stop smoking and vaping.

Collaborate across the Ecosystem

We’ve seen coalitions of organizations form during this crisis to address pressing needs, and we know that in order to break down walls and bridge gaps for patients we need to collaborate across the ecosystem. 

This is the nature of the work we do in the Center for Health Experience Design and how we are forming collaborations and partnerships to address important aspects of this crisis.

We were able to expedite this work by leveraging the foundation of past purpose-driven collaborations, like our work in addressing the opioid crisis. “Deaths of despair,” which includes overdoses, liver disease, and suicides, claims 150,000 lives per year in the United States and has led to a reduction in U.S. life expectancy. There is real fear that the COVID-19 crisis and its aftermath will make the situation even worse in the future.

However, if we set out to collaborate across the ecosystem and design for scale, we can begin to approach systems-level change. We've just launched a new challenge in the center represents a call for the whole family to design creative solutions for better hygiene behaviors. As we've learned ideas that start small, can become movements.

Ensure Universal Design & Equity

We need to ensure that all of us have equal access to quality care and systemically address the disparities in social determinants of health that become obstacles. People of color have experienced worse outcomes associated with COVID-19, which reflects the disparity that is pervasive.

People should not be classified as "exception cases," and as we can see, the few can flip to many overnight. It’s impressive to see how solutions designed in support of people who are homebound are benefitting so many today. 

Universal design is good design and benefits all – not just a select few.  

I believe that we can engage our creativity in looking toward the light, but we also need to fearlessly investigate dark patterns. We know that we often focus on designing for the happy path – journey mapping the ideal experience, as we hope it will be, and we can be unaware of our biases.

We need to consider what could go wrong and plan and provision for it accordingly. Sara Holubek from Luminary Labs spoke at the Health Experience Design Conference (HXD) two years ago on ethics and how we can go about anticipating the dark patterns that may occur in the not too distant future by watching sci-fi movies.

Perhaps, the current situation will propel us toward a future when we consider the unintended consequences of the solutions we are designing, and we will then use every opportunity to improve the situation for those who are marginalized. 

Democratize Information

Fueling innovation involves sharing information and building communities of interest and feedback around that information. During the COVID-19 crisis, we were able democratize evidence that was being gathered in Italy on efficacy in social distancing interventions through a Center for Health Experience Design (CHXD) webinar. Within a day of launching the webinar, hundreds of people had participated. This community is amazing.

Health literacy is an important aspect of the democratization of information. Only 12 percent of the population is proficient at any given time in understanding what they need to understand in order to make the best health decisions for themselves and their family members. As context changes, that percent shifts. 

Lay a Foundation of Wellbeing

We know that wellbeing is the foundation for health. Factors that affect wellbeing include sleep, nutrition, activity levels, mood, mental health, emotional wellbeing, spirituality, and relationships, to name just a few. It is crucial that we engage and empower people to adjust the aspects of their lifestyle that affect their health.

Accelerate Innovation

We need human-centered design and innovation now, more than ever, but we also need it fast. We must get productive experiences to market quickly.

At Mad*Pow, we're figuring out ways to do just that, exploring the notion of efficiency innovation.

We’ll soon be releasing DIY remote collaboration canvases for effective workshops that will enable teams to rapidly illustrate journeys and service experiences in order to identify obstacles and bottlenecks, as well as ideate concepts, prioritize solutions, gather feedback, and build consensus.

Prioritize Preparedness

How can we ensure that our processes provide the time and budget for imagining what can go wrong and provisioning for it? How might we determine what could become high urgency or high volume and stress test the experience against it? 

We were able to build out a proactive experience a few years ago for MGH Telemedicine that has turned into a high-demand experience. The focus of the project was how to set up primary care doctors to effectively meet with flu patients so that they don’t need to come into the office while they are contagious.

This is one of many health@home and on-the-go digital health experiences that paved the way for the services that we are all relying on now.

Deliver Ubiquitous Experiences

Effective diagnostic experiences will be imperative moving forward. We’ll be releasing Design Guidelines for Diagnostic Experiences to help those deploying diagnostic experiences to hit the ground running with important considerations.

Digital modernization has led us to buttress offline touchpoints and processes with digital experiences pushing for integration and seamlessness. This environment mandates fully independent digital-only experiences that can support a high volume of demand.

Supporting key journeys digitally will take weight off employees so that precious human time can be spent where it is needed most.

We were able to build a ubiquitous experience for chronic condition management in collaboration with Dartmouth Hitchcock medical system. The solution, now spun off and called ImagineCare, empowers patients to work toward self-efficacy at home, but also connects them to a care team monitoring them 24/7 so they feel supported and not alone. In pilot, patients loved this solution; outcomes also improved, and costs came down.

During our work with Dartmouth Hitchcock, trusted relationships were formed. We need to consider what types of relationships that we are hoping will form as the result of the experiences we are designing. How do those relationships play out? What do they look and feel like? How do they respond to new information or situations?

In a project with the VA, we focused upon facilitating communication between patients and doctors via virtual visits and their ecosystem of mobile apps.

Artificial Intelligence or AI should help us to have more timely, personal, and effective interactions with other people – enabling organizations to boost access, support a higher volume of interactions, and to switch from inbound reactivity to proactive outreach, coaching and relationship management.

Relationships Are Everything

The relationships we form and the ideas we share will keep us inspired. The individual decisions we make will affect our teams. The efforts our teams make will affect our companies. The steps that our companies take will affect the lives of many. The collaborations we launch will orient a new direction and set a new baseline for the industry.

Our empathy has the power to transform - and together we will create a future of connectedness.