Translating the voice of the community into design strategies for cancer care

I share this belief in the power of community voice with my fellow user researchers and experience strategists at Blue Cottage of CannonDesign. Together, we connect authentically with people and relentlessly advocate for their needs, beliefs, fears and dreams when crafting bold design strategies. 

We conduct interviews, focus groups and intercepts with patients, loved ones, care team members, staff, researchers, faculty and more to deeply understand who they are, the experiences that have shaped them, which of their needs are not being best met today and their expectations for the future.

We have done this work with hundreds of people across diverse geographies (e.g., urban, suburban, rural), at different scales (e.g., community-based health, destination medical centers) and within a variety of specialties (e.g., cancer care, ambulatory care, pediatrics). 

This piece focuses on the insights we have learned related to cancer care and how they influence design strategies, specifically at a master planning and site design scale.

Here are insights from our conversations:

Patients and loved ones

Progress is sacred and information provides clarity. Patients and loved ones, particularly those arriving at a cancer care center for the first time with uncertainty of their diagnosis, want to know exactly where they need to go, the easiest path there, what to expect next and what is available to them during their journey.

"When I entered (the building), I didn't see the lobby or other people. I didn't see any of those things, I wanted to talk to a doctor, and I wanted to know what was next." (Patient)

Emotions deserve privacy. Cancer is hard and patients and loved ones need places to go when they need to be human, so they can take their moment and then go back to fighting, supporting and caring.  

"Go a little extra mile to make me feel like a person, not just a patient." (Patient)

Loved ones are part of the team. Loved ones take on a lot in the cancer journey. They deserve to be a valued part of the conversation (if the patient chooses) and for their individual needs to be supported so they can be their best selves when supporting a patient’s recovery. 

"I need to take care of myself first so that I can take care of you." (Loved one)

Art and nature can heal and inspire. The power of art and nature is sometimes overlooked. Connection to the world beyond the hospital — whether literally or abstractly — can change a person’s outlook, momentum and trajectory.  

"Please stay away from culture because what one culture may love and accept, another culture may be offended by. That's why I said it must be nature because nature's neutral." (Patient)

Hope is more important than belonging. Patients and loved ones want to feel and see hope more than they want to feel like they belong. What does this mean exactly?  

Abraham Maslow’s Hierarchy of Needs theory outlines people’s primal and innate behavioral motivations. Drawing on this framework, we conducted interviews with patients and their loved ones as part of a destination cancer care project. To test whether Maslow’s priorities held, participants completed a word-sorting activity — unaware the words were tied to the theory.

The results for patients and loved ones were incredibly consistent with the original framework, but uncovered one really interesting nuance. For both patients and loved ones, Hope and Belonging were “flipped” (meaning that Hope was prioritized before Belonging), a detail that may be attributed to cancer-specific experiences, especially given the sentiments we heard that “no one wants to belong to the cancer community” and that “moments of hope” are what keep patients and loved ones connected to survivorship.  

This fundamentally changes the way we design. It shifts our focus to finding opportunities to put innovation on display, humanity at the forefront, and joy in unexpected places.

The workforce

Sometimes you just have to be able to take off the badge. Care team members need places that empower them to take off their badge, refresh, and step away from their role for periods of time.

Connecting to the bigger mission. Everyone, irrespective of their role, wants to know that their work has an impact on the greater mission. 

Finding flow state drives innovation. Clinicians, nurses, researchers, faculty, fellows and more need to be able to find their flow state to tackle big, complex problems quickly.  

Design strategies we can apply to master planning and site design    

Create a community — inside and out
This means designing places for patients and loved ones to actively (interactive) or passively (private, reflective) gather if they have something in common (e.g., diagnosis, culture, language, hobbies).

Design Strategies: reflection rooms, virtual connection networks, guided programming (e.g., art tours, cooking classes).

Breakdown the scale — foresight and intuition 
This means placemaking that says to patients and loved one,s “You have arrived, and you are in the right place to start your unique journey. Come this way.” Wayfinding elements that quickly establish where people are and where they are going in the context of their whole journey.

Design Strategies: pre-visit walk-throughs, interactive maps, parking garage interventions (e.g., directional lighting), strategically located basic needs (e.g., food and beverage, restrooms).

Adapt to the individual — make it their own 
This means places for patients, loved ones and care team members to connect back to their day-to-day life and give them the freedom to embrace their emotions, such as joy, anger, fear, sadness and happiness, in private and/or with others, if they so choose. Crying in bathrooms and stairwells is no longer okay.

Design Strategies: co-working space, places to “escape” (e.g., respite spaces, gaming and media theaters, outdoor spaces and playscapes, craft studios).

Inspire progress — big and small 
This means designing micro and macro milestones — even at the most unexpected of times — that provide hope and motivate patients and loved ones to continue fighting. There are never enough opportunities to instill hope. It is not just about a final ringing of the bell, it can be so much more. 

Design Strategies: interactive message walls, secret art moments, care team spotlights, elements of nature, inspirational sculptures. 

Design for collision — planned and spontaneous 
This means places where clinicians, nurses, researchers, faculty and fellows can come together — planned or spontaneous — to accelerate the translation of innovation into impact, and put it on display for patients and loved ones to see and be inspired by it.  

Design Strategies: smart collaboration hubs, coffee counters, innovation storefronts, real-time displays, in-situ training suites.

What is the purpose behind all these user engagements and the countless hours spent speaking directly with patients, loved ones, care teams, staff, researchers, faculty and more?

It lies in not assuming we understand stories we have never heard, needs that are still unmet or expectations that have yet to be voiced. It is about believing that everyone should be able to speak for themselves, and that what we learn from these stories must shape our design responses.