Misconceptions About Patient-Centric Co-Design

What are the main misconceptions about patient-centric co-design?

It’s about interviewing patients. This is not true! Co-design is a conversation between equally important stakeholders in which each expresses their needs and motivations. Yes, the company has strategic intent and a general framework for the problem they think they want to solve. But the end users and indirect users – whether that’s patients, caregivers, or healthcare providers – have the motivation, the desires, the pain points, the unmet needs. With patient-centric co-design, patients who will ultimately use the solution or be affected by its design have a voice and agency in the process. Involving them at the outset empowers them in framing the problem and shaping the solution. Empowerment also fosters a sense of ownership and commitment leading to more successful and sustainable solutions.

Co-design isn’t worth it. False! Actively involving patients leads to better usability, higher user satisfaction, and higher adoption rates. Beyond solving design problems, patient-centric co-design builds relationships and trust with patients, patient advocacy groups, and caregivers. This sense of community can be extended beyond the project itself, creating a foundation for continued collaboration and long-term positive impact. Also, designing with patients in the early stages lets you avoid costly mistakes and major changes throughout the development and clinical trial phases. Co-designing with patients can be done in many different ways depending on your timeframe and budget.

I don’t need to add another expert to the conversation. Many companies say, “I already have engineers, designers, and marketers, why would I want to add more stakeholders?” They want to rely on their internal technical experts because that will be the easiest and least time-consuming thing to do. But the point of view of the end user can change how you frame the problem and go about solving it. When you invest time in co-designing with patients, they can help your experts deliver solutions that are finely tuned to user needs. It’s absolutely vital if you want your solution to actually meet the patient needs and be adopted once on the market.

Regulators do not allow patient-co-design or do not need it for approval. Again, this is not true: patient-centric co-design is very much allowed and needed. Some companies believe that because regulations are so strict, you can’t engage with patients at all, which is simply not the case. Of course, you have to work with patients in a compliant and transparent manner. But indeed, we see regulatory bodies, such as the FDA, encouraging patient engagement by releasing guidance for these interactions. And an enormous benefit of patient-centric co-design is that every interaction with patients creates evidence that you can use to support your submissions.

How do companies feel about patient-centric co-design?

In our experience, most companies want to be engaged with patients – and some believe they are doing it already. I’ve worked with some people who truly thought they were patient-centric, but either their methodology was based around their engineers, or they had never actually spoken to any patients. The problem is not all companies have the experience and the methodology to go about it.

Often, companies are excited about the idea of interacting with patients. But their plan is to find one or two patients, ask them a couple of questions, and assume that’s good enough. Why does that happen? Because of the misconceptions we talked about. Because they can check off a box marked “patient engagement.” Because it’s not easy to be truly patient-centric. It’s not like engaging with a key opinion leader (KOL). The procedure you follow to get insights from KOLs is well understood and already happens regularly across the industry. But when you engage with patients, it requires a different process. A lot of companies just don’t have that set up, and they often try to do something basic instead to save time and effort. But as we spoke about, patient-centric co-design actually saves companies time, effort, and money and results in a more successful solution.

How should companies start co-designing a solution with patients?

First, you’ll want to carefully recruit the patient partners with whom you will work. Then during the first phase of your co-design process, you’ll collaborate closely with patients to:

• Define and understand the patient journey.
• Identify your potential users and create patient personas, identifying the specific characteristics of the population for whom you will design.
• Define a set of design requirements that ensure your solution addresses patient needs.

Can everyone do patient-centric co-design?

Yes and no. Everyone has the capability to learn and implement co-design methods to capture insights and target users. But it takes experience and industry knowledge to perform truly co-designed activities with patients and their caregivers in a compliant, systematic, and holistic manner.

Alira Health brings our expertise in patient-centric co-design and cross-functional knowledge of the healthcare ecosystem to help you involve patients with your internal experts to co-design solutions. We can create a package adapted to your needs and requirements, whether you want to start with a small step or take a comprehensive approach.

Contact us to discuss your co-design strategy.