Updated: Apr 11
(my opinion for the Participatory Medicine organisation. A community on a mission to transform patient care )
For the past 20 years, I’ve been involved in designing diverse health experiences: from diagnostic to adherence tools, from software for cytostatic preparation to integrated mobile health solutions. During these projects, I cannot say that the patient was never included in creating these solutions. However, there has been a remarkable evolution into “how” the patient was included. In earlier years, the patient was mentioned as part of the context we were designing for. In more recent years, the patient became part of the co-creation process itself.
The patient drove this evolution. In our global patient research, we increasingly noticed how patients felt enabled in the choices related to their disease. The study, conducted across the many therapeutic areas, always included the same scale that allowed patients to indicate the influence he or she believed to have on the treatment choice. From 2016 onward, we started noticing that 50% of patients considered being in the lead of their disease. One out of six patients even felt themselves being the primary decider. To me, these results indicated two essential shifts in health and disease management: the patient feels like he is also in charge, and the healthcare professional makes them feel in control. These insights were compelling and motivated all stakeholders to switch gears in the creation of health experiences. Being able to feed or nurture this feeling of empowerment became vital.
Creating patient value
Nevertheless, this belief did not necessarily make the design of health experiences easier. Patients were indeed included to understand their needs better. But the products and services did not always create the desired value. We made a solution based on their needs, but it wasn’t generating the engagement we anticipated. Often, scientists quickly concluded that patients weren't that engaged after all. We made this in the patient's best interest, with an evident focus on his or her need. How much more patient-centric could we be? And indeed, it wasn't an easy nut to crack. But I firmly believe that patients are engaged with their health and happiness because everyone wants to be healthy and happy. So how come we could not engage patients as much?
It was only later that I realised that products and services, merely based on the needs of patients, may not generate enough value or engagement. After all, the same people did have more engaging experiences in other industries, which in turn created different expectations towards health experiences. I understood that many of the available patient products or services were not meeting those expectations.
The life aspirations of patients
When studying the satisfaction with the treatment experience of several diseases, I've also come to realize something as valuable. On top of meeting the needs and expectations of patients at the different touchpoints in a customer journey, it is as important to appeal to people's life aspirations. Our research indicated a clear correlation between treatment satisfaction and meeting the life aspirations of people. Diabetes patients want to feel protected and have optimised energy. Epilepsy patients desire to accept the progressive aspect of their disease yet feel safe throughout the day. Patients with Crohn's Disease wish to be in the moment when having meaningful connections at work or with friends.
Respect patient goals, values and preferences.
Building and offering engaging health experiences for patients requires considering the needs, expectations, and life aspirations. In the words of SPM’s Participatory Medicine Manifesto: Let's learn to respect patient goals, values and preferences. Only then we will be able to really empower and embolden patients. Only then patients can really be engaged in the participation of their own health.