On the occasion of World Vitiligo Day, which is observed on June 25 every year, we got in touch with Yan Valle, CEO of the Vitiligo Research (VR) Foundation, at the 3rd VIPOC (Vitiligo International Patient Organizations Committee) conference in Amsterdam, The Netherlands. In the follow-up to our interview from last year, we spoke about the Vitiligo Patient Journey Map, which was published by the VR Foundation in December 2021, and about how the patient journey as such has changed in the course of time.

Please tell us more about the idea to create such a Vitiligo Patient Journey Map and for which patients you would recommend it.

Patient journey maps have been used throughout healthcare for a very long time. A traditional map describes a patient’s experience as they live through the disease in general, or progress through the particular healthcare environment. The typical journey begins with the symptom manifestation, then goes through pre-defined stages of diagnosis, treatment and follow-up for a certain disease. Essentially, it is a provider-centered view, with business efficiency in mind.

Right around the World Vitiligo Day last year I was thinking: What if we flip the map and put the patient in the center? Then, we should lay out before them every option available: from the first disease encounter to their satisfaction with results. We would have to visualize the entire landscape, highlight the best routes, indicate decision points, mark known pitfalls and put in estimated “time to destination”. Above all, it should be pragmatic yet optimistic – a kind of antidepressant for a stressed-out patient.

After five or six attempts involving three designers we have put all of that on the map, with some touch of humor. The Vitiligo Patient Journey starts, like in real life, long before the patient ever steps into a dermatologist’s office. Often prior to the proper vitiligo diagnosis, patients are exploring “Dr. Google”, chatting on Facebook or leveraging social media to evaluate their situation. Once they go past the initial shock and fear of the unknown, they start questioning the treatment process itself, in the view of forthcoming expenses and real-life outcomes.

This is where the Vitiligo Patient Journey Map becomes handy; thus it needs to be seen by patients, their relatives and friends, support groups, family doctors and dermatologists. I promoted it at this year’s VIPOC conference through leaders of vitiligo patient groups and doctors. It is meant to be hung on the wall, to draw people’s attention and to spark open discussion about different paths, treatment options and outcomes.

How and in which context can it be used by patients?

It can be used as a bird’s eye view of the patient journey, first to have a quick sense of time and direction. We see two major routes on the Map leading to totally different outcomes – I call them “Spotless” and “Beautiful” – with multiple stops, loops and hidden connections in-between, some bearing timestamps.

What would it take to get from here to there and what time would it take? Take, for example, a range of medical treatments. How much effort do you need to commit to this or that route? And that’s a very important decision to make because it may take months or even years to get to one’s destination. A scientifically minded patient can explore all the opportunities further and discuss them with a dermatologist.

In your opinion, what does the patient journey in the digital age look like?

The patient journey looks a lot more messy and chaotic nowadays than it was before. Not such a long time ago, there was just one doctor – or “polyclinic” in some places – that you would go for diagnosis and treatment. Today, patients are actively involved in their own care, yet sometimes with dire consequences.

They can get tons of free advice instantaneously, so they try to cover all the bases at once: Instagram, “Dr. Google”, friends and families. And these opinions are frequently incompatible, often none of them being right. Then, they start looking for a “health expert” – labeled Dr. Foggy on our Map – to make sense of that chaos. Finally, the wisest of them would start looking for a specialist – that we call Dr. Bright – while the rest would go around the Vicious Circle of misguided treatments, as indicated on the map, or drop out completely.

Our fully interactive Vitiligo Patient Journey Map aims to mitigate shortcomings of both the “old-school” and “modern messy” patient journeys; it will be available online later this year.

What is the difference between a traditional (treatment-driven) and modern (patient-driven) journey, how has this changed in the course of time and what should change in the future?

Most of the patient journey maps were designed by pharma or healthcare industry to demonstrate the flow of patients through stages of their product or service use. It doesn’t always take in mind what’s best for the patient. It also overlooks emotional, behavioral and lifestyle factors influencing the patient’s decisions.

Traditionally, patients had no choice or even knowledge of their options. They would come to the hospital or dermatological clinic and then they would use whatever was offered by this particular place. Today, they know that there are different options available. They request some more information before they make the right decision, but not every doctor is ready to give it to them out of own lack of experience or concern for their unsupervised self-treatment.

For example, you go to your family physician, and back in my days this is what happened. Our family doctor told us, “Oh, vitiligo is incurable. Forget about treating it”. And my parents agreed, “Okay, if it’s uncurable, there is not much we can do about it”. They have never sought a second opinion because they trusted their family physician.

Fast forward 15 years. A new family doctor told us there are different treatment options, and they were there back in those days. But I missed the proper time and it is too late for me to begin treatment now. I did it anyways, for several years, but it didn’t work for me.

With this Patient Journey Map, I want to help new patients avoid getting in the same situation. They should know that there are different treatment options available. Here are the routes, with common pitfalls and travel times. And if you feel like your family physician or your dermatologist are not experienced in vitiligo, just ask them to take a look at the map together. That’s how the decision-making landscape has changed.

What are your next goals concerning the Vitiligo Patient Journey Map and World Vitiligo Day on June 25th?

My plan for the Vitiligo Patient Journey Map is to make it interactive, zoomable down to the smallest detail. Next, our goal is to map areas with potential triggers that lead to disease onset. Being aware of vitiligo risk factors and comorbidities – it is called Dermatology Transit on our map –, patients can take precautions to prevent or delay onset of the disease.

The Vitiligo Patient Journey Map in its present form is supposed to be printed and put on the wall at the patient support group meeting, dermatology clinic, conference and so on and so forth. We have the full-size file available for download on our website. Anyone can download and print it – poster size – for the price of a fancy coffee.

The map is already translated in several languages, and there are more to come. We will have it soon in German, Italian, Spanish, French and Russian. Maps in these languages will be available for download by June 25th. And we can also customize it and put a patient support group logo on the map upon request, so all group members would feel connected through the map. We can even reasonably adjust it, to account for differences of national healthcare systems – like in the USA and UK – and for the local sense of humor.

Many thanks for your time and insight!