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How building a culture of patient co-design can lead to more robust “patient-centric” outcomes


Sarah Brown and Judith Anders, experts from our Medical Strategy team, explore how patient co-design can and should be implemented into clinical trial design, publications, and more to create meaningful collaboration, better outcomes, and greater value for patients.

A popular term in the biopharmaceutical industry is “patient-centricity, which was first defined in 2017 after a collaborative venture with pharma and patient groups. Patient-centricity has been defined by Yeoman et al, as “putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family.” However, industry leaders recognize that while there is a great deal of talk about patient-centricity, with pharmaceutical, medical, and healthcare companies often claiming to “put patients first,” many are yet to deliver on their promise to hold the patient’s needs at the center of all their decision-making.

In a speech in 2011, UK Health Secretary Andrew Lansley first coined the phrase “nothing about me, without me.” He also noted how healthcare systems tended to be rooted in paternalism and needed to move toward more collaborative approaches in which patients are active participants in their own care, rather than passive recipients of it.

Despite the improvements that have been made over the last couple of decades, for example, collaborating with patient advocacy groups to gain insights to drive better patient engagement, progress is slow and fragmented. The definition of “involvement” can vary greatly from person to person and company to company, along with the extent of direct engagement with patients and the number of people within a company who place patient centricity at the heart of their thinking.

While pharma companies frequently speak to healthcare professionals and patient advocacy groups about patients’ needs, in some cases, they may spend less time asking patients what they want. As a result, patients’ wishes and preferences can remain unclear.

One 2019 study surveyed 3,200 patients in the USA, UK, China, Germany, and Japan to better understand what patients wanted from pharmaceutical companies and found that only 44% reported their needs were currently being met. They indicated the attributes that mattered most were committing to affordable access, trials that reflect the real world, outcomes that matter to patients, and providing transparent information.

We are already witnessing early signs of the era of participatory health including people living their lives and managing their health according to their own priorities, in partnership and consultation with healthcare professionals as needed.

Thanks to today’s technological and scientific advances, patients are more informed than ever, and listening to their voices has become crucial for ensuring future success. Patients are now being recognized as important stakeholders in the healthcare dialogue as regulatory health authorities are requesting patient input into decision-making.

To ensure we work toward true partnership, we need to shift “patient centricity” from a passive process, driven by industry needs, into a far more active, collaborative process driven by both parties’ needs and preferences.

That is why we believe companies should consider the term “patient co-design,” which means patients are fully involved in every step of the development process, from inception to launch and beyond. Rather than including patients on an ad hoc basis, patients must be there to be heard and included as part of the team so their challenges and needs are fully understood, and medicines can be optimized around their wants and priorities.

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