Balancing Clarity and Uncertainty for Patient Engagement

Updated: May 17

In this article, we delve into the paradoxical concept of using uncertainty as a design element, illustrating how it can be harnessed effectively to enhance patient engagement without compromising the clarity and precision of medical information.

Originally published: November 28, 2023 for Ayogo Health Inc.

Introduction

Nephrologists and clinicians, social workers, nurses, and psychologists all strive to give patients the most accurate and comprehensive information about their condition. However, in the realms such as CKD care where complexity is high, providing patients with every detail upfront can sometimes be counterproductive. Too much clarity can lead to cognitive overload. When everything is laid out, there’s no room for exploration or personal discovery. The human brain thrives on a mix of known and unknown; it’s the challenges, the puzzles, and the need to find answers that keep us engaged. Without these elements of uncertainty, patients may feel they have all the answers, leading to complacency. They might not feel the need to ask questions, dive deeper into their condition, or be proactive about their care. On the other end of the spectrum, an overload of clear-cut information can feel overwhelming, leading patients to disengage out of sheer cognitive exhaustion. This is why striking the right balance between clarity and uncertainty can produce positive outcomes, such as:

Sustained Interest: The mix of clear educational milestones and the satisfaction of uncovering new information keeps patients engaged. Instead of being overwhelmed with a deluge of facts, they are paced through an intriguing journey of discovery about their condition.
Empowered Decision-Making: Armed with both knowledge and the curiosity to explore more, patients feel empowered to make decisions about their care. This is crucial, especially when deliberating on significant choices like dialysis modalities.
Improved Comprehension: By introducing concepts progressively, patients gain a more profound, layered understanding of CKD. They’re not just recipients of information; they become active participants in their learning process.
Adherence to Regimen: When patients comprehend the ‘why’ behind their treatment, they’re more likely to stick to their prescribed care regimen. The uncertainty principle, by igniting curiosity, encourages them to seek out and refresh the ‘why’.

Join us as we delve deeper into how the power of positive uncertainty can be harnessed to activate and engage patients in the decisions and activities related to their care.

SERIOUS PLAY: Leveraging Playful Design Principles in CKD Patient Education

The principles of game design, as highlighted by Raph Koster in his influential work “A Theory of Fun for Game Design” offer valuable insights into patient engagement in the context of CKD. Koster posits that the core appeal of games lies in their ability to turn learning into an enjoyable journey. This concept can be a game-changer (sorry) in how we approach CKD patient education.

Integrating Discovery and Action

Playful systems captivate players by presenting challenges and fostering a sense of discovery. They encourage players to learn by interacting with the game world, making each discovery a rewarding experience. Applying this to CKD, we can aim to transform patient education from static information dissemination to a dynamic, interactive process, by incorporating elements like interactive modules and scenario-based learning.

Navigating Uncertainty with Engagement

In the context of a game, the uncertainty of outcomes and the necessity to make strategic decisions keep players engaged and invested in the process. Similarly, in managing CKD, patients face various uncertainties regarding their condition and its treatment. By framing these uncertainties as challenges to be navigated, we create an environment that encourages patients to actively seek solutions and engage deeply with their care plan. This method transforms potential roadblocks into opportunities for patient empowerment and education.

By adopting these game design principles in CKD education, we can shift the paradigm from passive reception of information to an active quest for knowledge and self-management. This not only makes the learning process more enjoyable but also more effective in fostering patient engagement and adherence to treatment plans.

The Duality of Uncertainty

In CKD care, understanding the duality of uncertainty is key to effective patient engagement. This concept encompasses two facets: positive uncertainty, which can motivate and engage, and negative uncertainty, which may lead to anxiety and inaction.

Positive Uncertainty: A Catalyst for Engagement

Positive uncertainty in CKD management can act as a catalyst, stimulating patient curiosity and proactive behaviour. By introducing aspects of CKD care that are not immediately clear, such as the long-term effects of lifestyle changes or the nuances of treatment options, we encourage patients to actively seek knowledge and become more involved in their care. This approach can transform the patient experience from a passive journey into an active exploration, enhancing their understanding and adherence to treatment plans.

Navigating Uncertainty: Understanding and Addressing Concerns

On the other hand, negative uncertainty arises from a lack of clear information or overwhelming complexity, which can lead to patient anxiety, fear, and avoidance behaviours. Acknowledging this aspect is crucial in CKD management. By providing clear, digestible information and support, healthcare providers can alleviate these fears. This involves simplifying complex medical concepts, offering reassurance through patient education, and providing structured pathways for patients to follow, thereby reducing the overwhelming aspects of their disease management.

Transforming Negative Uncertainty into Positive Engagement

A crucial aspect of managing CKD lies in transforming negative uncertainty into a form that positively engages patients. This transformation involves guiding patients through their initial fears and uncertainties towards a path of curiosity-driven exploration. For instance, a patient's apprehension about treatment side effects can be addressed by educating them on not just the 'what' but the 'why' behind each treatment, thereby turning a source of anxiety into an opportunity for learning. Additionally, involving patients in shared decision-making processes can shift their perception from feeling overwhelmed to feeling empowered. By carefully navigating these transitions, healthcare providers can help patients move from a state of apprehension to one of informed, motivated participation in their own care journey.

In the realm of design, the power of ‘maybe’ is profound. Stanford Professor Dr. Robert Sapolsky’s insight that “‘maybe’ is addictive like nothing else” sheds light on the dopamine-driven motivation behind human actions. When outcomes are less than 50% certain, dopamine rises, pushing individuals to engage, explore, and anticipate. By introducing elements of positive anticipation in CKD care—be it through regular feedback on treatment progression or innovative tools that gamify health monitoring—we can use this principle to our advantage.

Balancing Clarity with Uncertainty

The Buchla 267e Uncertainty Source creates tonal interest by adding randomness to a synthesized instrument

While introducing elements of uncertainty can engage, it’s crucial that this is balanced with clear guidance and actionable advice. Patients need:

Clear Information: Understandable explanations about CKD stages, potential complications, and treatment modalities.
Structured Pathways: Defined steps they can take, such as diet changes, exercise regimes, or medication schedules.
Supportive Frameworks: Tools, perhaps in the form of apps or digital platforms, that allow them to track, monitor, and get feedback on their health metrics.

By integrating the mysteries of anticipation with the certainties of clear guidance, we can craft an approach that is both engaging and effective.

Practical Applications

The principle of balancing clarity with uncertainty can be aptly applied to CKD care, especially in the realms of kidney disease education and modality selection. Let’s delve into practical applications that can make these processes more engaging and informative for patients, leading to empowered decision-making and better health outcomes.

The Role of Uncertainty in CKD Patient Care

Understanding uncertainty isn’t just a conceptual exploration; it’s pivotal in CKD management. CKD, by nature, is a progressive disease with stages that sometimes don’t manifest overt symptoms until the advanced phases. This inherent unpredictability can lead to a heightened sense of anxiety and concern for patients.

Examples of Positive Uncertainty

There are a range of useful design patterns that we can use to surface positive uncertainty in our Experience Design. For those seeking some practical advice, here are some specific suggestions.

Mapping the Future

Introducing positive uncertainty through goal-setting in a patient’s program involves framing goals as evolving maps to a future state. As patients progress, their discoveries and growth expand this map, adding new territories and details, making the journey more engaging and personalised.

Dynamic Goals: Adapt the content or description of goals to reflect the patient’s growing knowledge and capabilities. As patients acquire new skills or insights through the program, goals can evolve to match their heightened understanding and proficiency. This approach ensures that goals remain challenging, relevant, and aligned with the patient's current state, keeping them motivated and invested in their progress.

Mini-Goals and Side Quests: Introduce optional mini-goals or side quests that patients can choose to pursue. These smaller, quickly achievable tasks add variety and a sense of immediate accomplishment. They contribute to making the program feel more tailored and relevant to the individual's interests and needs, enhancing the overall perception of the program as personal and timely.

Variable Rewards and Moments of Delight

Variable and Unanticipated Rewards can be constructively linked to patient achievements, such as mastering a new self-care skill or reaching a health goal. The unpredictability of these rewards adds an element of surprise and delight, making each achievement feel unique and more gratifying. This strategy can add a layer of personal significance to each milestone they reach, enhancing their overall engagement with the process.

Points, Badges, and Progress

Progress bars and dashboards contribute to positive uncertainty in patient engagement by providing a visual representation of progress that is both informative and anticipatory. They show patients how close they are to achieving their goals, creating a sense of excitement and curiosity about reaching the next milestone. This anticipation, where progress is visible but the final outcome or next stage is not fully revealed, stimulates engagement and interest. It is important that the visual representation of progress should directly correlate with progress the patient themselves would recognize as meaningful, such as skill acquisition or health milestones. The goal is not to measure progress, but to bolster patient confidence and underscore the value of their efforts to them.

Contant Type Variability

Predictability and regularity can often be an enemy of interestingness. Utilising diverse formats and interactivity not only caters to different learning styles but also introduces an element of unpredictability, keeping the educational journey dynamic and engaging.

Diverse Formats: Instead of sticking to one format, use videos, quizzes, infographics, and more. Different formats can introduce variability, catering to different learning styles and introducing the element of surprise.

Active Learning Prompts: Incorporate questions or reflective prompts within the material, urging patients to think actively, engage with the content, and form their conclusions.

(Gasps in Spanish): Narrative Storytelling

Incorporating narrative character-based storytelling into educational materials can introduce an element of mystery and interest, and engage participants more deeply by fostering emotional investment in the characters and scenarios. For a typical example, short anecdotes are often used to illustrate key points in a lesson.

At Ayogo, we took this approach one step further in the redesign of a medical weight loss program’s educational content. Rather than providing straightforward instructions on diet and exercise, we developed the modules into a “choose your own adventure” story. Participants navigated a protagonist through various scenarios, making choices that directly impacted the narrative. This format created a sense of emotional investment in the characters, turning each decision into a personal and engaging experience. The tone we adopted in this case was a melodrama, based on a Telenovela “soap opera” style that would be recognizable to the audience we were designing for, and clearly communicate that this was different from the bland and predictable content and approach they were used to.

As you may expect, participants would guide the protagonist to successful outcomes by making the “right” choices, as they saw them. We were pleased to see that they often returned to previously-completed stories to explore the consequences of alternate, “wrong” choices, thereby engaging with every aspect of the program materials. Interestingly, this storytelling approach provided an unexpected advantage in group discussions. Instructors could discuss negative examples more comfortably by referencing the characters' experiences, allowing for open discussions without personal vulnerability.

Moreover, we leveraged the participants' emotional connection to the characters (will Julio ever find true love!?) by using the unlocking of new story "episodes" as both a reward and a measure of progress. Each new episode, unlocked after achieving certain milestones or completing specific modules, not only represented progress but also kept participants eagerly anticipating the next chapter in the story. This method effectively maintained engagement and motivation, as participants were keen to see how their choices and learning would unfold in the narrative, thereby enhancing their overall educational experience.

The message here is not that all educational content should be rewritten as a Mexican soap opera (although: would that be so bad?), but that information doesn’t become interesting just because it is important. That’s often something we need to do purposefully.

In the Real World

The principle of balancing clarity with uncertainty isn’t just theoretical to Ayogo. Our service, CKD LifePlan, leverages gamification principles, introducing challenges and goals that provide the unpredictability of real-world scenarios while providing clear feedback and guidance. Bridging the gap between clarity and uncertainty is one of the ways in which the platform is designed to drive patient engagement.

Introducing "Mark"

Consider Mark (not a real name), a patient recently diagnosed with advanced CKD: Mark is in his 60s and managing CKD stage 4 after a stroke, initially approached the CKD LifePlan program with a mix of interest and scepticism. He felt little urgency to act on his CKD because he was not experiencing any noticeable difficulties with urination, a misconception that his condition was stable. This clarity—misguided but comforting—posed a barrier to taking critical preemptive steps.

Mark’s CKD LIfePlan Guide introduced an element of “positive uncertainty” by posing thoughtful questions and scenarios that gently disrupted Mark’s perception, revealing a more nuanced picture of the significant choices looming on the horizon, including the initiation of dialysis.

The guided journey through the LifePlan content sparked an intellectual curiosity in Mark and his caregiver. They became partners in a quest for knowledge, seeking to resolve the newly uncovered uncertainties that the Guide had woven into their path. As they navigated the complexities together, the sense of urgency blossomed into action.

Mark’s initial belief that no immediate action was needed was transformed. Now armed with a better understanding of CKD and its possible trajectories, he and his caregiver were mobilised to prepare actively, exploring more deeply the program’s educational resources. The introduction of “positive uncertainty” had successfully engaged Mark, shifting his trajectory from passive observation to proactive engagement with the questions posed by his CKD.

Incorporating design patterns that play on clarity and uncertainty in real-world applications offers one innovative approach to patient education. As seen with platforms like LifePlan and through the experiences of patients like Mark, this balance can drive deeper understanding and engagement, making a genuine difference in the lives of those managing CKD.

Conclusion

Chronic Kidney Disease, with its multifaceted challenges and need for diligent management, demands a thoughtful and innovative approach to patient engagement. While the significance of clarity in patient education and management cannot be overstated, there’s an untapped potential in weaving in elements of uncertainty. As we’ve seen, this doesn’t mean leaving patients in the dark but rather engaging them in a dynamic learning journey where they’re actively involved in their care decisions.

A balanced approach, integrating both clarity and controlled uncertainty, holds promise not only in enhancing adherence but in fostering a more proactive, participatory role for patients. It creates a landscape where patients don’t just passively receive information but actively seek, interact with, and challenge their understanding, leading to a deeper grasp of their condition and its management.

Call to Action

To our dedicated nephrologists and clinicians: as you chart the waters of CKD care, consider the uncharted territories of gamification and controlled uncertainty. Venture beyond the traditional confines of patient education. Introducing elements of playful design into your patient engagement strategies might be the key to unlocking new levels of patient enthusiasm, comprehension, and participation. Remember, every moment of doubt or challenge faced by the patient can be transformed into an opportunity for deeper understanding and connection. Embrace the game of balance and let’s make an impact together.

Bonus Level: Navigating the CKD Dungeon

The Importance of a Guide in Managing Uncertainty

In the world of Dungeons & Dragons, the Dungeon Master (DM) is not just an overseer but a storyteller and guide, dynamically shaping the game’s narrative based on the players’ actions and decisions. The DM introduces challenges, sprinkles in uncertainties, and crafts moments of suspense, ensuring that the players are always engaged, curious, and invested in the outcome.

In the realm of CKD management, Ayogo’s LifePlan Guides play a role akin to the Dungeon Master. Ayogo Guides introduce tailored challenges to the patients, adding elements of unpredictability to their treatment journey. While they ensure the scenarios are grounded in real-world consequences, they also provide opportunities for patients to ‘play’, make decisions, and witness potential outcomes. The dynamic interplay between the guides and the patients transforms the typically linear experience of CKD management into an interactive narrative, full of moments of learning, growth, and discovery. This promotes deeper patient engagement while fostering a sense of agency, where patients feel they are active participants in their program rather than passive recipients.