How might we design an engagement strategy that motivates patients to start and stay on a vital new treatment that will delay, but not cure, their loss of vision?
Iveric Bio Macular Degeneration
About the project
Iveric Bio has pioneered a groundbreaking treatment for Age-Related Macular Degeneration (AMD), specifically for those with Geographic Atrophy (GA). This treatment aims to ease the transition into a sight-impaired life, enhancing overall quality of life. While not a cure, it holds the potential to slow the progression of vision loss. To benefit from this innovative solution, patients must commit to a monthly injection regimen.
Facing a diagnosis of GA can be daunting, and Iveric Bio's treatment aims to support patients in navigating this life-changing transition. Our focus is on not only enhancing provider engagement and education but also delivering a premium patient experience. The ultimate objective is to position Iveric Bio uniquely in the market, priming it for widespread adoption.
Our approach involves a thorough understanding of patient needs and the provider's role. We strive to develop a strategy that not only fosters growth for the treatment but also inspires the GA ecosystem to prioritize the patient's journey, from the initial stages to routine adherence and beyond. Throughout this project, we've identified key themes, patterns, and insights, refining our hypotheses and pinpointing optimal opportunities for designing a transformative patient experience.
Planning and Design Research
There was much we were unfamiliar with regarding Macular Degeneration, requiring extensive exploration before finalizing our research plan and conducting participant interviews. This marked my first project as the sole Design Researcher, with guidance from our Project Lead.
To kick off, the entire team engaged in a pre-research phase, organizing our queries in a "What We Want to Learn" (WWWL) brainstorm. This categorized our questions related to each stakeholder: patients, providers, and the client. As we formulated our research plan and discussion guides, these questions evolved and adapted. The team also gathered inspiration, visuals, and articles related to sight loss and macular degeneration, fueling our insights and design principles development.
Conducting research in the Bay Area and Chicago, we observed five eye injections, spoke with multiple providers and patients, gaining firsthand insights into how GA patients navigate life with failing eyesight. Many were unaware of strategic tactics for home reorientation but instinctively sought high-contrast screens, magnifying glasses, and large text. Retinal specialists highlighted the constraints in changing anything within their offices, given the high volume of MD patients, sometimes exceeding 40 needing eye injections daily. We also delved into analogous and empathy research, receiving vitamin injections and touring Lighthouse SF (a blind and visually impaired institute), among other activities, all factored into our final design considerations.
As we synthesized findings, delegation and development became more streamlined.
Opportunity Areas
We promptly recognized the need to revise our initial "how might we" question, shifting the focus from motivating patients to take the new drug to motivating them to *continue* taking it. Given that the medication only slows down sight loss rather than curing it, and necessitates a lifelong monthly injection treatment, the prospect can seem tedious. Developing a solution that both encourages and educates patients about ongoing drug adherence becomes essential for sustainability.
Following our initial research, we identified four opportunity areas and presented them to the client team to define our scope. They chose to focus on Opportunity Area 2 (tracking and communicating GA disease progression) and Opportunity Area 4 (helping patients feel connected and cared for). Despite the treatment's potential to slow down vision loss, there will be minimal to no development or improvement in patients' OCT scans. However, patients still seek validation and communication with their retinal specialist.
Our research methods included in-context observations, empathy experiences, tangible provocations, user interviews (at home and in person), and analogous research methods.
Below are the cards I created for our tangible provocations, shared with both patients and providers during their interviews. We inquired about their current eye experiences and what they wished it could feel like. From the eight expression cards, participants selected the one that felt most akin to their experience.
We've crafted concepts to engage, educate, and reassure GA patients right from the waiting room. Interviews revealed challenges in modifying activities within the doctor's office due to providers managing multiple patients and treatments simultaneously. Considering the patient journey, we opted to implement our concept in the waiting room, recognizing that patients often wait for 40-60 minutes for their treatment.
Design Principles and Insights
Design Principles
Fill Resource Gaps
Do the things that RS don’t have time for. Empower GA patients with multimedia education and holistic resources.
Lead with Accessibility
Put GA patients at the center by designing for low-tech and low-vision capabilities. Always provide options and alternatives.
Utilize Patients’ Trust in RS
Strengthen and build upon the existing touchpoints between GA patients and Retinal Specialists. Deliver information in a way that conveys trust.
Insights
Invite Emotional & Relational Growth
Create moments of reflection and connection between GA patients and caregivers. Affirm their motivation to stay on treatment.
Make Data Digestible
Give unobstructed access to the facts. Use simple and clear language to help GA patients make sense of changes to their vision health.
The injection isn't even the hard part
Our research revealed that factors surrounding the injection treatment proved to be more challenging than the injection itself.Transportation to appointments is a huge hurdle, especially in rural areas. Some patients are fortunate to have family members who can give them a ride, or have enough tech savvy skills to order an Uber or Lyft. Others are not so lucky, and have trouble keeping appointments.Unfortunately, the process of rescheduling an appointment is anything but easy. We heard that most patients prefer to call the clinic, but it can be challenging to get someone to answer the phone. And if there’s a problem with their insurance coverage, often they don’t know who to call.
Everyone feels lost without a way to measure progress.
The fact that ACP does not stop or reverse damage is a major stumbling block in motivating GA patients to start and stay on treatment. We heard that Retinal Specialists need new tools. Not only to improve their own workflow, but also to have better conversations with their patients—about GA disease progression, what this new treatment does, and how to know it’s working. Patients and caregivers also want a more convenient and consistent way to track vision loss, beyond the doctor’s office. Uncertainty around their progress leads to increased anxiety, depression, and doubt.
GA Patients want to do the most they can, with what they have.
Even with the promise of injection treatment becoming increasingly available, all GA patients must adjust to inevitable vision loss.When it comes to practical tips and tactics for living with low vision, most GA patients are in the dark. They are familiar with tools like a magnifying glass, but things like specialized lighting and high contrast plates and placemats had never crossed their mind. The problem is that GA patients lack awareness of strategies to preserve and optimize their vision. They want to—but they don’t know what to do, and doctors don’t have time to teach them.
GA patients want support, but not new friends.
Initially, those with early signs of Geographic Atrophy thrive on maintaining independence. They don’t want to be a burden on their loved ones, or even ask for help. But the experience of losing eyesight can be extremely scary, isolating, and debilitating. Eventually, patients desire emotional and social support. We heard that GA Patients crave connection and want to feel cared for, but only from people they already know and trust—like partners, family, friends, and certain doctors. At their age (65+) building community is hard, and not necessarily desirable. So they tend to prioritize deepening existing relationships over making new ones.
Final
We devised three waiting room concepts: a retinal specialist video library, a self-assessment, and a physical card deck.
To enhance Iveric Bio's distinctiveness from their competitors, we proposed tablets pre-installed with a digital library of video and audio content in the retinal specialist's office. Recognizing patients' trust in their providers, the content addresses resource gaps and dispels misconceptions about injection treatment, accessible in the waiting room on a tablet with an interface adjusted for blind spots.
The self-assessment, conducted at each visit, allows GA patients to assess concerns, seek reassurance, and determine when to ask for help. With questions about vision health, well-being, and treatment experience, results indicate support needs and suggest relevant resources. The Help Score provides a quantitative measure of assistance required, with data privacy ensuring immediate deletion after the session. Recommended Videos guide users to the Video Library.
The Waiting Game, a physical card deck for the waiting room, features prompts and activities to engage, educate, and reassure GA patients and caregivers, also available in a digital version.
Our clients expressed enthusiasm for the concepts, already discussing next steps during the presentation. Plans are underway to continue the project as a Beacon and bring these concepts to life.