Patient Design: The Importance Of Including Patients In Designing Healthcare (Preprint)

Abstract

Today, except for the commercial obstacle inserted by paywalls, patients can have access to the same healthcare online resources, studies and data as medical professionals (4). Empowered patients want to get engaged in their health or disease management. Patient scholars have published in prestigious medical journals (7)(8)(9) , , . The #PatientsIncluded movement has led to involving patients in medical events either as speakers or co-hosts. Governments such as the one of New Zealand have started developing digital health policies featuring empowered patients. These examples further underscore that a more patient inclusive design approach is already emerging and will inevitably be the norm. The only thing holding it back is cultural resistance, which is why we say digital health is a cultural transformation. In the 2010s, a myriad of pharmaceutical, medical and healthcare companies started to use patient centricity as a mantra. Each claimed that their company is patient centric thus ahead of the others. Pharmaceutical company executives started making “putting patients first” part of their slogans and internal documents. A 2020 survey revealed that 85% of companies were raising their investment in patient-centric capabilities over the next 18 months (10).

We analyzed the differences between patient centricity and patient design. To drive this paradigm change fully into existence, we are calling for changing "patient centricity” from a relatively passive process, driven by industry’s needs, into a far more active, collaborative process driven by both parties’ needs and preferences. In short, it’s no longer viable for patient centricity to mean “We were thinking about you while we made our decisions.”

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This social movement has already progressed to where examples exist to illustrate the shift in thinking - the paradigm change. In the paper, we show multiple existing examples of patient design and how it can contibute to healthcare.

We are at the end of the only period in history where physicians knew important scientific facts and medical insights that patients could not. For healthcare to achieve its potential in this new era, our methods along with our paradigm must change. To build this new world of practice and workflow we simply must engage with patients as true partners. To achieve medicine’s new potential, it must be optimized around the wants and priorities of the ultimate stakeholder - the party that has the most at stake in how it all plays out: the patient. Patient design is the approach that can make it happen.