Speaking from Experience: Three Calls to Action from the Diabetes Community

How can you get people who don’t live with diabetes—especially those working in the healthcare industry—to understand your daily challenges and needs? At the 2018 annual DiabetesMine University innovation summit, we introduced a service design method called journey mapping that can empower people to communicate their experiences, collaborate with others outside of their community and create their own innovative ideas

Bridging the Communication Gap

The goal of this workshop was to foster dialogue, collaboration and understanding between people with diabetes (PWDs) and informed patient advocates, pharmaceutical marketing and R&D leaders, regulatory experts, clinicians, digital health leaders, and device designers. These diverse groups worked in mixed teams to zoom in on key frustrating moments that people with lived experience encounter almost every day, but that are often far from obvious to team members working in industry and members of the broader public.

These types of experiences take time to play out and include many different people, in multiple places, and cross the boundaries of different organizations. Because of this, they require a big-picture view in order to get them just right. The group members needed a visual anchor to collaborate on how these problems could be tackled. The best way to capture this view was with a map of the experience.

Capturing Experiences Using a Journey Map

A journey map is a timeline of each of the steps within an experience. It should capture information about what is happening at each moment, where you are, who is involved, how you are feeling and most importantly, why you feel the way you do. During the workshop, participants told stories about the unsolved challenges that they felt were the most impactful on their lives and captured them on these maps.

Next, they identified the moments in the journey that were disjointed and too complicated to navigate. They thought about ways to simplify, coordinate, reframe relationships and ultimately create better face-to-face interactions with family, friends and healthcare providers.

As the workshop progressed, it turned out that even a seemingly simple event like going out with friends came with complications. Measuring your BG on the go, bringing enough glucose, insulin and needles to manage a long wait, thinking about what you eat and how active you will be and the discomfort of having to disclose your health status to a stranger in an emergency were all things that needed to be considered.

Out of this collaborative work, we’ve collected three main calls to action that the groups would like industry, health providers and insurance to pay attention to and build on: planning for travel without stress, reframing the relationship with your endocrinologist, and better ways to deal with insurance. These calls to action are paired with the participants’ blue-sky ideas for solutions. The hope is that these ideas will help inspire industry to work toward real-life solutions for each of these challenges.

How can I get prepared without feeling so anxious?

Traveling is supposed to be relaxing and enjoyable, but when I want to plan a trip, I have to spend days considering all the ways that it can turn into a nightmare. What if I don’t have sugar and my BG is low, I go into a diabetic coma and don’t have access to a doctor? Or if my pump malfunctions, or my needle falls—do I have enough supplies? I have to think through as many disaster scenarios as I can to make sure I’m prepared with a plan to avoid something serious going wrong.

Inventing plans from A, B and C all the way to Z is exhausting and traveling is often a burden rather than a vacation. My confidence gets low and I wonder if I should be trying to do this at all, or if the risks are just too high.

Solution Idea: Type 1 Travel Outfitters

To prepare for a trip, you would build your itinerary through a digital app. You would enter the location you are traveling to, length of stay, your accommodations, type of transportation and activities. The app would then provide you with a customized checklist of things to do to prepare for your trip. This list would include things like:

• What medical supplies you will need

• The right kind of kit to store them in

• What back up travel supplies to include

• How to access medical supports close to you

If you want to make preparing even more smooth, you will be able to purchase a kit with the supplies that you need through the app that is mailed straight to your door. If you were going to the desert, for example, the kit would include a FRIO case to keep your insulin cool. If you were going to the forest, glucose supplies would come in a double-sealed packet to hide the enticing smell from bears. The idea is that the app would do the work for you, in terms of anticipating the worst-case scenarios, and direct you exactly to prepare for those, thus building your confidence in a smooth travel experience.

How can I build a positive relationship with my endocrinologist?

Just knowing that I have an upcoming doctor’s appointment can make me apprehensive. Part of the stress comes from all the homework that I have to do in advance—getting labs done, downloading my BG data, printing it off, getting time off work, paying for travel and parking, and finding someone to pick up my kids from school.

During my appointment, I have to justify everything I’ve done between visits as the doctor points out every low or high reading in my logbook. My A1c becomes a number that depicts whether I am a good person or not and I am left feeling guilty and ashamed. Part of me wishes that I could hide parts of the data from them so that I could avoid the guilt trip. I just wish that they could understand what these meetings feel like for me so that we could have more constructive conversations.

Solution Idea: Empathy Training for Endos

To build a better experience of visiting the endocrinologist, the groups described a clinic where staff would receive specially designed training to teach them to build healthy, patient-centered relationships and approach every patient with positivity. The healthcare professionals would be specifically trained to:

• Ask you about your personal goals, needs, and concerns

• Learn about the barriers that are blocking you from achieving your goals

• Be understanding and helping you build a plan to overcome those barriers

• Encourage you to do your best

• Acknowledge your successes

• Thank you for visiting

The relationship should be reframed from one that is about expert judgement and prescribing, to one that is about equality, caring, coaching and support.

How can I get the devices I need without jumping through hoops?

With all of the technology that has been created to help manage diabetes, you would think it wouldn’t be too hard to get the right BGM, CGM, or insulin pump for me. But the reality is, trying to figure out which technologies are covered and fit my needs is difficult. I have to choose what device I want without even trying it to find out if I like it. I find myself going back and forth between my doctor, the pharmacy, the insurance, and even Amazon; trying to figure out what I can afford without getting too overwhelmed.

My insurance company requires me to get A1c labs and submit paperwork to prove that I still have diabetes. It feels like my insurance company wants to stop me from accessing the tools I need to better manage my health. The requirements for approval and the justifications for rejecting a claim are hard to understand, and even if my claim is approved I end up feeling dissatisfied with the device I have in the end. The whole process is so frustrating that even a pump that is old, hard to use, or partly damaged is better than the process of getting something new and potentially better.

Solution Idea: Insurance Navigator

A better experience of health insurance will begin with a new type of insurance company — a company that recognizes that if they provide easy access to the tools you need, it will be better for you, the healthcare system and the payer in the long run. They would pair anyone with a chronic condition with an insurance navigator, a single point of contact who is on your side and fights for what you need. These navigators would help you by:

• Keeping your profile so that you don’t have to prove you still live with diabetes

• Helping you access discounts and lower-cost supplies and insulin wherever available

• Making it simple to understand what devices are covered and when you can switch

• Assisting you in test-running devices like CGMs before you buy them

Your experience should change from one where you have to ask all the questions and fight for information, to one where you are guided through the process without the back-and-forth or bureaucracy. The insurance provider would benefit by having patients paired with navigators provide customer reviews (presumably positive) and by tracking the improved health outcomes of their members.

What Comes Next?

These three calls to action and concepts are just the beginning of the process. Now that these opportunities have been identified, we’re opening them up to the community because we need the voice of both patients and industry to make living with diabetes easier.

How well do you think these familiar challenges were addressed? Is there anything that was missed? Would you like to learn more about using journey maps to cultivate empathy and brainstorm solutions?

Let us know with a comment or email us at: hello@humanfactors.ca.