A major pharmaceutical organization approached Bridgeable to support in understanding the patient experience and to provide recommendations for developing resources that alleviate the confusion and stresses of patients newly diagnosed with rare kidney diseases. We were interested in understanding the holistic experience of patients living with these diseases and the healthcare providers (HCPs) who treat them to understand what supports we could develop alongside treatment with our partner’s new medication.

We navigated toward a meaningful solution by implementing a human-centred design approach, ensuring our prototype and recommendations provided patients with all the critical information they needed based on our research findings.

To understand the holistic impact of these rare kidney diseases, we engaged diagnosed patients, HCPs, educators, and other experts to inform, design, iterate, and validate an ideal welcome kit that aligned with the needs and preferences of patients and other stakeholders in this particular disease space.

5 key insights for a beneficial welcome kit

Our research uncovered 5 key insights that shaped the role of the welcome kit in supporting patients trying to navigate these diseases. We discovered that the welcome kit should:

1. Bridge the knowledge gap: We learned that disease education is a critical unmet need. Patients desired to learn more about the disease and how it would affect them personally, but they didn’t know where to turn for accurate information. They also had a limited understanding of the numbers on their lab results and the differences between healthy and unhealthy kidneys.
2. Connect the dots between knowledge and action: Patients expressed a desire to be empowered to take control of their health. By understanding the connection between disease management and healthy living, they can create actionable plans that meet their own needs.
3. Lead patients to find strength in others: Life with these diseases can be an isolating experience. Patients were looking for connections and support — which was challenging to find, and many feared placing the burden on their loved ones.
4. Set expectations about side effects: When starting new medications, patients are most interested in understanding their side effects and when to contact their doctor.
5. Personalize disease management: Many patients expressed varying needs and desires regarding health management and employed a variety of management tools and strategies to suit their individual needs and preferences.

With these findings, we developed asset prototypes to be included in the welcome kit and validated them with patients to provide final recommendations for what we would implement. Our prototypes included:

• A guide to taking the medication: This prototype discusses the key aspects of taking the medication in patient-friendly language, including:
• A ‘know your numbers’ guide: This prototype explains to patients in plain language the key lab result numbers they can expect to encounter from their kidney labs. It also demonstrated the importance of understanding these numbers and how they can be managed through lifestyle changes.
• Information on managing the disease: This prototype aimed to encourage patients to take control of their holistic health in 3 key ways beyond just taking the medication.
• Tips for talking about your kidney disease: Isolation can be a considerable part of these kidney diseases because they are so rare and hard to understand for those who don’t experience it firsthand. Many patients “look healthy,” so their loved ones might not see the invisible tolls of these diseases. This prototype supports patients in talking to their loved ones about their disease, how it makes them feel, the impact it can have on social situations (especially meals), and how their loved ones can support them effectively.

Designing the welcome kit

The final welcome kit was composed of disease information to fill the knowledge gaps, medication information so patients understand how to take the drug effectively and how it works in their bodies to manage the disease, and, community, lifestyle, and diet information to support patients in navigating the non-medical aspects of their care.

We also recommended adding delighters to the welcome kit, which aim to add an element of joy and surprise and reduce the anxiety and stress of opening a clinical package. We were mindful to choose meaningful and feasible items.

Our research taught us that patients manage the disease and medication in many ways. So, rather than providing a one-size-fits-all adherence tool in the kit, we recommended that patients schedule follow-up calls a few weeks into their treatment to check on their progress and allow them to choose an adherence tool from a list of possible options.

Pushing the schematic forward

Along with the final schematic for the welcome kit, we established guiding design principles that would inform all of our partner’s stakeholders in the final development of the kit. We phrased these from the patient’s perspective to emphasize their role in aligning all of the design decisions in the kit. These design principles were all informed by insights gathered from the patients themselves.

“Emphasize my possibilities, not my limitations”: An encouraging tone of voice resonated the most with patients and caregivers. Use a style of writing that centers on the person rather than the patient by positively reframing suggestions and promoting self-advocacy.

“Don’t overload me with information”: Due to the volume and complexity of disease management information, patients don’t want to get bogged down in too much detail too soon. Be intentional when designing information hierarchies, use direct and concise language, and don’t dwell too much on the “why”.

“Help me develop my own approach”: Preferences for information density, category, form, and cadence range widely. Each individual will organize their disease management system to best suit their needs and lifestyle. Offer robust resources online, and allow for as much personalization as possible.

With each principle, we provided an explanation of what we heard from patients that inspired the principle, ways for our partner to implement the principle, and quotes from patients to emphasize the impact on the patient experience.

From prototypes to the final product

The research and prototypes laid the foundation for our partner to produce the welcome kit alongside their production partner confidently. Knowing that the structure and concepts included were co-created with real patients newly diagnosed with these rare chronic diseases and the healthcare practitioners who treat them provided a sense of assurance that the welcome kit would be effective and could be efficiently implemented.