SERVICE DESIGN - EXPERIENCE DESIGN - HUMAN-CENTERED DESIGN

BRAIN CANCER NAVIGATION

Team: Kaitlyn Paulsen, Anya Zimmerman-Smith, Nathan Chun, Riley Knowles, Diana De Rada

IN SHORT

As part of an Independent Study in Advanced Human-Centered Design at the Rick and Susan Sontag Center for Collaborative Creativity, I worked collaboratively through co-design with Nurse Navigators from the Brain Tumor Network (BTN) to redesign an aspect of their brain tumor navigation services through Human-Centered Design delivering services they can offer to improve caregiver experience and capitalize on navigator expertise.

IMPACT

Our final design deliverables were
enthusiastically received by BTN and can be seen on their website as tools offered to patients and caregivers. Our final report, with links to our midterm and final presentations, can be found here. Furthermore, this work was foundational for my senior thesis, several portions of it on the Brain Tumor Network are included below.

California + Florida

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UNDERSTANDING THE PROBLEM SPACE

What relationships exist in the neuro-oncology space and how does the Brain Tumor Network function?

To begin our design process our team interviewed tens of nurse navigators, social work navigators, palliative care nurses, brain cancer patients, family caregivers, and physicians.

I created a stakeholder value web to help clarify the actors in the system and the ways they engage with each other. This proved to be a valuable internal tool for BTN and was the basis for our Caregiver Centered Care tool shown further below.

We realized....because of the unique mental and physical challenges brain cancer brings to patients, superhero caregivers are at the center of the Brain Tumor Network care model, navigating complex situations and overloads of information, and relentlessly searching for the silver bullet to save those they are caring for.

HOWEVER

Navigators are instrumental translators, incredible information finders, and compassionate friends to caregivers and patients enduring difficult medical situations involving misunderstandings, bad timing, stress, and confusion.

Navigators keep caregivers afloat.

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EXPANDING IMPACT

How might we help the caregiver feel more control over an out of control situation?

After extensive empathy work and co-design sessions we defined Points of View and specific insights which led to the design of tools for nurse navigators, caregivers, and patients. We identified several main insights where BTN's services failed to have the impact they could or could be improved to elevate the experience for one or more of the stakeholders--

INSIGHT #1

Navigators lack access to augment negative physician-caregiver interactions.

INSIGHT #2

Caregivers and patients come to BTN with a limited understanding of the wealth of resources the organization can offer them, and often do not know the services they need before the need them.

INSIGHT #3

Navigator focuses on caring for the other and fails to care for self--burnout.

INSIGHT #4

Medical information is sorely in need of redesign and it’s language is almost impenetrable to those who do not “speak” it.

How can we use these insights to improve the experience for a patient, caregiver, or navigator?

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ADDRESSING INSIGHT #2

Ensuring a well supported journey: Welcome Package

The Brain Tumor Network has a plethora of fantastic resources for caregivers and patients, but they don't seem to use them all--why? Caregivers, being so focused on finding the silver bullet solution for their family member, can sometimes become fixated on one need and come to BTN with that in mind. Additionally, because of the complexity of the disease and medical situation, they are faced with the difficulty of keeping track of scores of contacts, and information of all kinds. With this in mind we created the Journey Map to be given at the beginning of a caregivers journey with BTN in hopes that it will lead them to utilize more of what is offered, and created the Caregiver Centered Care framework for them to organize their world.

The Journey Map is a comprehensive visual aid that outlines the services that BTN offers to caregivers and patients. Distributed at the beginning of a patient’s journey with BTN, the Journey Map will expand patients/caregivers' thoughts on what resources they might utilize to impact their medical outcome, and allow them to see the big picture.

The Caregiver Centered Care Framework is a tool for caregivers to help bring their entire care network into focus. This tool outlines potential agents in the care network such as family, Navigators, insurance providers, and oncologists. There are two versions of this prototype, both of which are personalizable to help caregivers bring all their contacts into one place.

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AUGMENTING THE PHYSICIAN RELATIONSHIP

How might we put the navigator's knowledge in every room when a patient & caregiver receive news?

Our second prototype, the ‘Navigator Sidekick,’ which places the navigator in existing video call appointments between the patient, caregiver, and physician, aimed to solve the caregiver's need for empowerment when it came to asking questions, understanding medical jargon, a medically trained ear to take notes, emotional support and to give the Navigator a path to augment the frequently fraught interactions between caregiver-patient-physician. The Navigator Sidekick improves aspects of the four essential categories below-- 

TIME

Hope

TRANSLATION

Confidence

SUPPORT

Safety

BIG PICTURE

Possibility

Patients and caregivers request their BTN Navigator to join them on various virtual doctor appointments to act as a “sidekick.” The Navigator supports the patient/caregiver during the appointment, translates what is difficult or confusing, asks questions, and immediately receives and synthesizes medical information as it is delivered directly from the practitioner, in order to quickly provide next steps.

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TESTING, FEEDBACK

Relief. Excitement. Support.

To ensure that our prototypes would be successful if implemented at the Brain Tumor Network we brought them back to navigators, caregivers, and patients for their feedback and thoughts. Through individual and group interviews as well as surveys, we learned that the simplistic impact of our tools proved true, as caregivers and navigators alike voiced strong support for them. It was clear that the ideas we came up with provided hope in a very dark and heavy experience.

“This service would be very helpful for a lot of people. I do an extensive amount of research which takes up a lot of time and emotional energy. I'm only picking up pieces of the puzzle and don't always have a sense of the big picture. Having a Sidekick would be very helpful.”

Caregiver, Wife

​"I believe this is an AMAZING idea. So many Brain Tumor patients and their families struggle in the start we have and having someone help you through these appointments could make a world of difference."

Caregiver, Father, Thorough Accountant

"I've learned that many doctors don't know how to talk to their patients effectively. Having a Sidekick in the conversation would ensure that we're asking the right questions of the doctor--and pushing them to clarify important details that will later come to bear on my brother's treatment." 

Caregiver, Sister, Professor

MAKING IT HAPPEN

How can we set the Brain Tumor Network up for success in implementation?

Central to our desire to do this project was to have a real world impact. Although we were working for an established organization we knew that implementation of our tools and services was not a given. To set them up for success in actualizing the Navigator Sidekick tool I created the implementation guide seen below, going for detail and allowing them to pick and choose which steps made sense for them. This, along with our guide for the Welcome Package proved successful, as both are now offered as services and tools for patients and caregivers at the Brain Tumor Network.

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REFLECTIONS

Navigators need support too.

While we felt proud of the work we did and excited to see the tools implemented at the Brain Tumor Network, one insight felt untouched and continued to call out for attention. It was continually clear that the individuals supporting caregivers and patients were going through emotionally taxing experiences as well and desperately needed tools and education on how to keep themselves healthy while dealing with such traumatic and tense situations. This is exactly what I decided to focus on for my thesis project and was thrilled to get to work with the UCSF Brain Tumor Center on support services for healthcare workers. The extensive work my team and I did on this project gave way to further real world impact in the neuro-oncology world.