reimagining sleep apnea care
How can we design a low-resource tool to improve the care experience for sleep apnea patients?
Project Title: Sleep Apnea Care Experience Redesign
Company: University of California, San Francisco Duration: May 2019 - August 2019 (4 months)
Key Project Activities: My Role: Design Lead
Design research and synthesis Collaborators: ZSFG Sleep Care Team, UCSF Center for Excellence in Primary Care (CEPC)
Design sprint/ideation session facilitation
Quantiative and qualitative research
Project management
Stakeholder management
Cross-functional collaboration
Inspire the use of HCD methods in a clinical setting
Context & Challenge
Patients with obstructive sleep apnea (OSA) can have a complex journey from their initial diagnosis to receiving their positive airway pressure (PAP) treatment device. Adherence to PAP therapy has been observed to be low in general, and the Zuckerberg San Francisco General Hospital (ZSFG) Sleep Care Team wanted to figure out a way to better support patients through their care journey and ultimately improve treatment adherence.
ZSFG is a safety net hospital that serves a diverse population of San Francisco residents, including uninsured, low-income, homeless, and refugee populations. The transience and turbulence present in the lives of some of these patients present additional challenges in the OSA care journey and barriers to PAP therapy adherence. The ZSFG Sleep Care Team and the UCSF Center for Excellence in Primary Care (CEPC) brought me in as a designer with specific expertise in healthcare to lead the team in incorporating human-centered design (HCD) methods on this project. As the sole designer on this project, I was responsible for not only managing all the data but also in leading the design research and synthesis. Keeping the unique needs of these patients in mind, our goals as a team were (1) to improve the care experience for OSA patients at ZSFG, and (2) to increase patient adherence to PAP therapy.
Making the Case for Human-Centered Design
The UCSF team consisted of clinical, research, and administrative staff who were generally unfamiliar with using HCD methods prior to this project. A significant portion of my work centered around presenting the value of design as a process for solving problems and managing complexity to the team and democratizing this process to make it easy for all stakeholders to be involved. I gave a talk at the internal research meeting and led a variety of design sessions with the team to build this design muscle and creative confidence.
There were a few reasons why HCD was an important addition to this project:
Managing Complexity: The OSA care journey is complex and systemic challenges further complicates this web and renders this problem to appear “unsolvable.” HCD is a way to break down this web into manageable parts and prioritize areas for improvement.
Behavior Change: Addressing PAP therapy adherence is ultimately a behavior change issue. The COM-B Framework presents behavior as a product of the interactions between a person’s capability, motivation, and opportunity. HCD allows us to tap into deeper insights and understand how various patient “mindsets” can be leveraged to encourage behavior change.
Empathy: Working from a place of empathy is a common factor between design thinking and healthcare. The HCD process starts with empathy-building, and the user, or patient, is at the center of every decision and every decision is ultimately to better serve the patient.
The Process
The process was a mixed methods approach that incorporated both traditional (quantitative and qualitative) research methods and HCD methods.
Exploration
This initial background research phase was critical to setting the foundation and baseline understanding of OSA in general as well as the specific OSA journey for ZSFG patients. This phase included:
Quantitative data analysis of adherence data collected by PAP device modems of actual device usage by patients to understand adherence patterns and any trends or patient segmentation
Informal literature review to understand OSA as a chronic condition, PAP therapy as a treatment for OSA, barriers to treatment adherence, and piloted interventions to improve treatment adherence
Informal literature review of patient-facing materials such as educational booklets used by the ZSFG Sleep Clinic and instructional videos created by PAP device manufacturers
Empathy-Building and User Journey Mapping
The first step in developing empathy for the OSA patients was understanding the process journey patients go through from when they first experience symptoms to when they are finally living with treatment which served as the anchor for the rest of the research. It was then important to flesh out this journey by speaking to stakeholders and patients to ultimately uncover the patient mindsets at each phase of the journey which would later enable design decisions. The journey mapping process was dynamic and iterative and the OSA patient care story came together piece by piece like a puzzle.
Stakeholder Research and Engagement:
The stakeholders were comprised of four groups:
Sleep care team (pulmonologists, respiratory therapists, patient scheduler)
Providers (primary care physicians and pulmonary fellows)
Patient health coaches
External sleep apnea experts
All of these interviews were generally unstructured to allow stakeholders to share their unique perspectives in a candid manner.
Patient Interviews and Observations:
Research with patients was conducted through both in-depth interviews (to understand explicit information directly from the patients) and in-context observations (to understand patient with minimization of recall bias and confirmation bias).
In-depth interviews were conducted with a variety of OSA patients from those that were perfectly adherent to those that had never opened their device. This strategy of understanding “extreme users,” or users at both ends of the adherence spectrum in this case, was a way to help arrive at insights.
In-context observations were done in two settings: (1) at the Sleep Clinic where patients came to speak to the care team about PAP therapy, and (2) at the group class hosted by the ZSFG sleep care team. Special attention was also paid to patients’ body language, tone, and reactions in order to understand underlying patient attitudes and perceptions to OSA care.
Key facts from each of these research interactions were downloaded immediately after each session and added to enhance the patient journey map.
Design Synthesis and Insight Generation
The next step in the process was to synthesize and analyze all of the data to come up with overarching themes and insights that would ultimately help define the problem further and prioritize areas for improvement. This was conducted by holding an affinity mapping session with the UCSF Center for Excellence in Primary Care (CEPC) internal research team with the goal of getting a fresh set of eyes on the research and involving the broader team in the design process.
Each member of the team was given their own set of post-it notes and markers to jot down overarching themes that they observed as the data was presented. After each phase of the journey was presented, the group discussed themes they came up with and an affinity map of themes and potential insights emerged. After the session, these insights were further refined to prepare for the ideation phase.
Design Sprint and Ideation
I designed and led the ideation phase of this project by creating a design sprint session called “Hacking Sleep Apnea” with the stakeholder team. Participants were given a folder with worksheets, stickers, and other design tools to guide them through the session and tap into their creativity!
The session consisted of the following four phases:
Storytelling: Patient personas were shared with the team to guide their thinking on who we were ultimately designing for.
Mindset Mapping: The team worked together to map each part of the patient journey with “patient mindsets.” I introduced the analogy of a hot air balloon to guide this process. In other words:
What happens during the journey that leads to negative mindsets “bring down” motivation? How can we minimize these?
What happens during the journey that leads to positive mindsets that “lift up” motivation? How can we leverage these?
Participants used sticker voting to decide on which positive mindsets and which negative mindset they felt were the most prevalent. The negative mindsets participants wanted to minimize were patients feelings “unempowered, confused, unmotivated, anxious.” The positive mindsets participants wanted to leverage were patients feeling “motivated, supported, in-control, prepared, and empowered.”
“How Might We?” (HMW) Statement Generation: After going through all of the research, it was time to start thinking about how patient needs were linked to the underlying motivations and mindsets we went through by crafting HMW Statements. These statements need to strike a balance between specificity and breadth in order to spark creative solution ideation. The group came up with the following HMW Statement: How might we design a low-resource tool to increase sensemaking and decrease complexity to make patients feel supported?
Rapid Ideation: Participants were given time to rapidly ideate solutions to address this design challenge and then share back with the group. Sticker voting was again used to prioritize ideas by favorability and feasibility.
outcomes & Impact
The solution that emerged from this project was creating a “roadmap” for patients to navigate them through the OSA journey. The internal UCSF team will be responsible for executing and implementing this proposed intervention. This project was successful in not only painting a fuller picture of the OSA patient experience and imagining potential solutions for care improvement but also in engaging various stakeholders across the care spectrum, instilling creative confidence in the UCSF team in HCD methods, and setting a precedent for incorporating HCD as a viable research method in a clinical setting.