Since a long time, patient-centricity is one of those buzzwords in the pharmaceutical industry that should be part of every conference speech or white paper. But if you ask how they have successfully implemented it, people scratch their head. It’s like the Holy Grail: everyone is looking for it but who has ever found it?
In this article, I’ll explain you my view on patient-centricity and look for inspiration in the domains of user experience design and design-thinking.
Introducing UX design
As I started my career in user experience (UX) and human-centered design, the buzz around patient-centricity has always surprised me. When designing new software, involving end-users actively in every single stage was self-evident (for me; not always for the IT guys). So, when I made my first steps in the pharmaceutical business, it was surprising to find out that this is not the case with patients during drug development. It was shocking to discover that some scientists and doctors do not want to consider patient input because “subjective and non-reproducible”.
A common misconception is that users are put in the driving seat.
Let’s have a look how users get involved in UX design before I focus on patients. A common misconception is that users are put in the driving seat and start dictating how the software or the mobile app should look or behave. I came once across such an occasion in the transport industry. The result was a horrendous labyrinth of user interface controls.
The essence of UX design is that end-users get involved, that you look for their needs and their insights and that you get their feedback during the entire development process. As result, this is an iterative (and sometimes agile) process. You create a mock-up, you get user feedback. You prototype, you get more user feedback. In every iteration, you go back to the drawing board to refine the design of your product.
Best case, a user can sit next to the driver.
An important law in UX design is that what users say is not always what they do. To overcome this gap, UX designers have a toolbox with dozens of techniques, such as usability testing or contextual inquiries (more info: Usability Body of Knowledge). During product design, a trade-off should also be made between user needs and your value proposition. If a feature is interesting for a user, but does not align with your business strategy, get rid of it. Again, that’s why users are never in the driving seat. Best case, they can sit next to the driver and give some hints about what roadblocks to avoid, but the driver is still deciding how to steer from A to Z.
Finally, UX designers are not only considering how users are using a product but they look at the entire experience. That includes practical considerations (e.g. usability, accessibility) but also more emotional aspects of product usage (e.g. risk avoidance, pleasure). In other words, user experience acknowledges all of the user’s characteristics and the context in which the product is being used.
Patients are users too
Let’s go back to the world of patients and drug development. A pharmaceutical substance aims to eliminate a disease, or reduce its impact (e.g. for some patients HIV is now a chronic condition instead of a deadly illness). Therefore traditional research focuses on identifying the right molecule and the right dosage scheme. Something else that surprised me is that this process is called drug discovery, not treatment discovery. In the end, it’s the complete treatment that matters for the patient.
Surprisingly, the process is called drug discovery, not treatment discovery.
So, why would a UX approach in pharmaceutical research make any difference? Let’s take the example of a type-2 diabetes patient where medication aims to control the blood glucose level. Weight gain is a potential side effect of intensive insulin therapy. Putting up UX-glasses, means we should not only solve the user’s original problem (namely diabetes) but also look beyond the disease and assess how a patient experiences both the illness and its treatment.
So even if the diabetes is controlled, the patient’s experience of the treatment will be poor when the patient’s weight increases. To improve the experience you could e.g. develop a truly effective drug that contributes to the patient’s weight control, or maybe support the patient with changing their lifestyle in terms of daily exercising and dieting by applying gamification principles.
The diabetes example shows that you gain new insights once you look at patients as product users. In this case, there are opportunities for pharmaceutical companies to look for drugs that address all of the user’s requirements, and provide tools that complement the drug and consider the entire treatment. (Talking about user requirements or user needs, that’s what drug developers also call patient outcomes. Oh, it looks like we are scoring another buzzword here.)
You gain new insights once you look at patients as product users.
If you where thinking that it’s odd to look at patients as users and apply methodologies you would expect when designing a mobile app, think again. Many pharmaceuticals are combination products, meaning that a device (like a pre-filled syringe or a transdermal patch) is being used to administer the drug. During the design process, regulations prescribe that questions should be answered like “did we design the device right?” or “did we design the right device?” Here it’s quite normal to look at patients as a user.
If you where thinking that it’s odd to look at patients as product users think about combination products.
Just like with smartphone users, patients are not put in the driving seat. Instead, the key is to look for interaction points during research and development where you can gain their insights, but also in the pre-discovery phase where you are still making strategic choices to ensure your drug will address the desired patient-outcomes.
From UX Design to Design Thinking
I hope you are by now convinced that patient input is crucial for designing effective healthcare solutions, but it may still feel weird to see a patient as a product user. Therefore, let’s look at design thinking (apologies, one more buzzword).
Design thinking was described by IDEO as:
a human-centered approach to innovation that draws from the designer’s toolkit to integrate the needs of people, the possibilities of technology, and the requirements for business success.
Now, if you look in detail at the process and the techniques used in user experience design, you would notice that there are a lot of similarities with design thinking. Observing user populations, define user needs, gaining ideas to solve user problems, prototyping and testing solutions… they happen at both sides. As Dirk Knemeyer wrote:
UX and design thinking seem like two sides of the same coin; the first is the more tactical and build-oriented manifestation, whereas the latter is the more strategic and conceptual manifestation.
Given the strategic impact of design thinking, this methodology is widely accepted in the boardroom, even within pharmaceuticals. But, without a link to UX design, design thinking for healthcare products risks to remain fluffy and stay behind the doors of the boardroom. At the same time, UX design may never receive the support it actually needs. That’s why the two go hand-in-hand: user experience design as the toolbox for gaining insights from patients on a day-to-day basis, and design thinking as the methodology that C-level executives should apply to make patient-centered design part of the drug development process.
With design-thinking in the boardroom of drug developers and UX designers complementing the world’s top notch scientists, the DNA of a pharmaceutical organization will change and I believe that patient-centricity will be the result.
Conclusion
There is no doubt that great science is the first elements towards transformational breakthroughs in medicine. However, it may not be enough to fulfill all of the patient’s requirements for an effective, comfortable and user-friendly treatment. That’s why designers can help to gain new insights and assist the scientists in discovering the best way to meet patient outcomes. That’s why C-level executives have a responsibility to make design thinking part of their companies’ DNA.
RD&D: Research, Design & Development
From a design perspective, it would not be wise to follow Indian Jones’ quest for the Holy Grail and look greedily for patient-centricity, just for the sake of following the industry buzz. In my opinion patient-centricity is rather the by-product of bringing design methodology in pharmaceutical research & development. That’s why I wait for the day where design finds its proper place in R&D and becomes RD&D: Research, Design & Development.
