yasu care
Empowering cancer survivors and their caregivers to accept more support within a cancer community.
what is YASU?
YASU stands for Young Adult Survivors United - it is a non-profit cancer community that provides holistic support to 400+ young adult cancer survivors and their caretakers.
the problem…
We found that YASU’s services have the highest impact when they are individualized because each young adult cancer experience is different, but the support YASU’s services currently provide is limited to a small group of people due to resource constraints.
the opportunity…
How might we enable YASU to scale as an organization and to provide support to more young adult cancer survivors and co-survivors?
the solution..
Enable more personalized support while also reducing operational load through replicating and digitizing human touch.
what we did…
Conducted 15 interviews, 12 observations, 8 literature reviews, 2 surveys, and 1 collaborative design session.
Delivered four service blueprints for all of YASU’s major services and found that all of YASU services are high touch.
Created a maturity model for YASU that shows how different sectors of the organization can mature over time what recommendations and implications would be involved.
Identified four levers of opportunity that can propel YASU’s growth along with major criteria to evaluate a future service design innovation.
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My Role
Lead UX Researcher
Created and administered a research plan and protocols for 20+ semi-structured interviews, contextual inquiries and observations, a diary study, surveys, and usability testing for a cross-functional team of 5 researchers and designers.
Led recruitment for 50+ cancer community participants.
Delivered artifacts such as service blueprints, an organizational maturity model, research reports, and a service innovation prototype to cause behavioral change in the staff and help YASU increase member engagement and gain funding.
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Core Methods
Heuristic Evaluation
Pretotyping
Contextual Inquiry
Interviews
Affinity Diagramming
Storyboarding & Speed Dating
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The Team
Diva Agarwal - Lead UXR
Elizabeth Chu - Service Designer
Jessica Lin - Visual Designer
Harkiran Saluja - Researcher
Joshua Suber - Client Relations
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Stakeholders
YASU’s Founder and cancer survivor - Stephanie Scoletti
YASU’s Administrative Lead - Lindsey Harshaw
YASU Board Members
400+ YASU members - cancer survivors and co-survivors
Understanding the Problem Space
Secondary Research
Key Takeaways:
Young adults diagnosed with cancer have specific concerns because it is a stage of life where they are seeking to build relationships, careers, and families.
The desire to seek support is correlated with the stage of cancer.
Our Process:
Digested content available on YASU’s website, social media, and internal resources provided by client.
Reviewed and developed a basic understanding of organizational history, structure, and services of five major cancer organizations: American Cancer Society, Gilda’s Club, Leukemia & Lymphoma Society, Livestrong, Cancer Bridges.
Reviewed 20 academic papers and articles on the young adult cancer experience to gain domain knowledge and get ourselves situated.
Stakeholder Mapping
Key Takeaways:
YASU members interface directly with staff but rarely interface with tools and systems, this puts an unsustainable amount of operational load on the staff.
YASU’s financial grant systems have different end-to-end processes on both the member and administrative sides, they are not centralized or uniform.
Our Process:
Creating a stakeholder map helped us visualize how different stakeholders within the organization were connected and how value flows — whether this was information, support, or funds. We continued to use this as a reference point and edited it as our understanding matured.
Heuristic Evaluation
Red Mark-Up Heuristic Evaluation of YASU's Financial Assistance Form
Key Takeaways:
Found major violations in the several Nielsen’s usability heuristics.
Our Process:
We performed a heuristic evaluation on the financial assistance paper application to see whether users are making errors because of the layout or wording of the document.
Pretotyping
Key Takeaways:
YASU staff have personalized communications with applicants, which takes more time and effort, there is a need for automated functionalities and a centralized interface.
Our Process:
To evaluate our early assumptions around the problem, we created an early prototype using Google Forms, Google Sheets, and App Script. The prototype was equipped with many of the core features our clients requested. We created this prototype to explore how YASU’s financial assistance system could be automated or streamlined in a few steps. This artifact was used to validate whether the root constraint for scalability was connected to the lack of an integrated workflow.
Expert Interviews
Interviewing the founder of Assemble, a 10-year old non-profit, to understand how non-profits scale successfully.
Key Takeaways:
Support organizations usually have a core and peripheral membership model.
Members with long-term relationships with other members stay more engaged.
Identifying what works well within the organization (how it succeeds at providing support) is just as important as understanding the challenges.
Efforts to engage members to hold leadership roles and/or volunteer will be more successful by being clear about roles, responsibilities, and impact.
Our Process:
We interviewed six experts in the following areas to elevate our research: Online Health Communities, Social Work, Systems Design & Thinking, Digital Transformation, Workforce Development, Non-Profit Strategy & Development, Charitable Giving, Nonprofit Marketing, Decision Making.
Researching YASU’s Operations & Impact
User Interviews
Key Takeaways:
Timing and barriers affect survivor engagement with YASU.
Survivors experience hurdles that affect engagement, which include: (1) transparency and availability of resources and (2) lack of comfort advocating for oneself.
The founder (Stephanie) breaks down these hurdles for a small group of survivors but survivors should also be empowered to support themselves and others.
Our Process:
We conducted semi-structured interviews with 14 users (nine young adult cancer survivors, two co-survivors, and three other stakeholders) to understand their cancer journeys, experiences with YASU, financial needs, and more.
Observations of YASU’s Services
Key Takeaways:
Survivors are concerned about keeping events virtually accessible.
Stephanie often checks in with each of the survivors personally, and handles most group facilitation.
The purpose of support groups is to help survivors feel seen and heard, especially when experiencing negative emotions like shame, guilt or anger.
Our Process:
We attended each type of support group or workshop that YASU offers in order to observe and note the overall dynamics and familiarize ourselves with the experiences that survivors and co-survivors have with YASU. Here were some that we attended: Daytime Chat, Parent Grief Support Group, Infertility Event, Self-Love Workshop, Co-Survivor Support Group, African-American Survivors Support Group, LGBTQIA+ Cancer Support Group, and Group Health Coaching.
Contextual Inquiry
The founder’s notes as she attends meetings and completes YASU related tasks.
Key Takeaways:
The clients reported feeling most overwhelmed by their long list of tasks, emails, and to-dos.
Work was interspersed with managing shorter-term initiatives and would often switch between different contexts.
Our Process:
We spent a day shadowing the founder and her administrative assistant at the YASU office (founder’s home). Viewing and understanding how YASU operated meant developing a deeper understanding of how the two-person staff utilized their time.
With this observation, we sought to answer four key questions:
What is the dynamic between the staff members, including how they communicate and discuss topics?
How does the staff balance their day- to-day responsibilities with long term initiatives and goals?
What tasks do they prioritize and how?
Empathy Mapping
Key Takeaways:
Stephanie’s own cancer experience influences the YASU member experience.
Stephanie and Lindsey approach supporting them differs based on experiences of YASU members.
Our Process:
Based on interviews conducted as well as client meetings and observations, we created stickies that best summed up the answers to the different questions within each section. To best build empathy through this exercise, maps were updated multiple times throughout our research timeline as the number of client/team meetings and interviews increased.
Qualitative Survey
Key Takeaways:
The main factor that influences member engagement is needing social, emotional, or financial help with cancer-related struggles.
Our Process:
The YASU Awareness Survey served to collect information on how members of the YASU community became aware of YASU and at what point during their cancer experience. We only got a 10% response rate and the results were not statistically significant so we only used them directionally to inform further research.
Sensemaking
Affinity Diagramming
Key Takeaways:
Core Insight: YASU’s services have the highest impact when they are individualized because each young adult cancer experience is different… but the support that YASU’s service currently provides is limited due to resource constraints.
YASU is an organization that operates on a high touch model because survivors tend to have a hard time advocating for themselves medically and emotionally.
Some survivors feel that there is a barrier to joining support groups due to the lack of desire to ask for help.
Stephanie, the founder of YASU, is currently responsible for all aspects of the organization and survivors value a close connection with YASU, which currently centers around Stephanie.
Our Process:
Following each research activity, we articulated findings and discussed quotes and observations regularly as a team. We initially attempted a digital synthesis in Miro, an online whiteboard tool, but took advantage of the shared physical space and the space-memory correlation and restarted synthesis in our lab space.
Prioritizing YASU’s Organizational Domains
Over the course of the project, we designed and iterated on our understanding of how the organization was structured and how it worked multiple times. This modeling helped us articulate our expanding knowledge and breadth of the problem space. We individually classified areas of the organization as high, medium, and low risk for scale, and built a model from this calibration.
Defining YASU’s What Is
Initial sketches of the service blueprint (current services) and the accompanying model (future services)
Key Takeaways:
The emotions during a member’s journey are often at odds with the efficiency of processes throughout the staff journey. When members are feeling positive and supported, the staff is executing multiple steps on the backend to deliver the experience.
Our Process:
We developed service blueprints for each of YASU’s programs and grants. This understanding of “What Is” in YASU today served as a jumping off point to make recommendations, or a roadmap, of “What Could Be” in the future.
Defining YASU’s What Could Be
YASU’s Maturity Model and Roadmap
Key Takeaways:
YASU is currently in Maturity Level 1: Initial stage of the Capability Maturity Model Integration (CMMI) - which means that it is at a stage where processes are ad hoc and chaotic and success is dependent on the competence and heroics of the people involved rather than processes and systems.
There are four valuable opportunities for design solutions to address four levers of growth within YASU:
Increase member engagement
Empower member advocacy
Optimize tools and communication
Grow staff and funding
Our Process:
Developing the roadmap required more than four iterations for our team. We used the “What Is” model and 400 members as a starting point and increased membership of 1000+ members as the initial goal of the roadmap.
Because sustainable growth needs to happen systematically, we searched for a relevant framework to apply our research and make concrete recommendations. The CMMI model guided us towards thinking about the tangible action needed and the rationale for the action.
Ideating Possible Solutions
Conducting a collaborative design session with our clients, a board member, and a survivor using participatory design methods such as “layered elaboration”.
Categorizing storyboards into solution types and ordering them by risk level
Speed Dating session with client
Key Takeaways:
We identified opportunities that can meet the needs of both YASU staff and members, areas of value include:
Streamlining YASU operational tasks and tools
New grocery service pipeline for the financial assistance program
Administrative tool
Providing in-depth training to members who could potentially be facilitators
Tracking mental/emotional health of members who attend support groups over time
Allowing for more flexibility with the financial assistance grant to members
Our Process:
To validate and evaluate the value of our ideas, we conducted speed dating with 11 storyboards with the YASU staff.
Our team produced a set of storyboards that showcased solutions on a scale of low to high risk level. Risk level is characterized by how much effort would be needed to make the transition to the proposed service innovation. Each of the storyboards corresponds to findings derived from our research.