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Unpacking patient centricity: What it is, why it matters and how an automated patient journey makes decentralised trials easier and more patient-centric
John Ristuccia, SVP of global client services at Suvoda, and colleague Andrés Escallón, VP, eCOA practice, break down patient centricity and how to leverage technology to better meet patient needs.
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ser-centred design has been a staple of the product and service economy for at least the last 50 years. Consumer
goods companies have led the way, with brands like Apple and Nike mining consumer insights to shift the boundaries of their industries. Design consultancies – such as IDEO or Instrument – are everywhere. Even humanitarian efforts, like programmes addressing HIV, employ user design to ensure interventions have the greatest chance of success. Within clinical trials, our version of user-centred design – patient centricity – is only just becoming more mainstream. Of course, there is a good reason why we have been slow to adopt these design principles: we are in the business of testing experimental medicines and procedures that can save people’s lives, or cause serious harm if patient safety is compromised. But we can take small steps to centre patients’
experiences in our study designs. If we hope to test medicines that are relevant across our diverse population, and if patient centricity is to become a reality for clinical trials, we must: • Hold a holistic understanding of the patient journey
• View patient centricity as both a mindset and a practice
• Work to build the trial designs and tools that make it easier for patients, sites and sponsors to move seamlessly through a trial
A holistic understanding of the patient experience: today’s gap
One challenge our industry has faced in adopting a more patient-centric approach is the lack of a complete understanding of the patient, site and
30 | Clinical Trial Supply Handbook
sponsor journey through a clinical trial. Sponsors and vendors identify discrete problems, and build discrete point solutions to address those challenges. The spate of technologies to support the industry – eConsent, eCOA, IRT, EDC, eTMF – are helpful, but when they do not integrate well, they can make things more complicated for sites and sponsors and unmanageable for patients.
This is the opposite of patient centricity. These point solutions make an implicit assumption that challenges within the clinical trial – whether they are about drug logistics, ‘parking lot bias,’ or managing patient data – can be solved through technology. But without understanding the full patient journey into and through a trial, technology tools can be just one more thing to manage. We need holistic understanding of patients to solve challenges in a way that makes it easier for patients to participate and stay in trials, for sites to run them, and for sponsors to generate efficacy data.
Viewing patient centricity as a mindset and a practice: our opportunity Patient centricity has been defined in many ways. It is both a mindset and a practice. At its most basic, the mindset of patient centricity means putting patients’ needs at the centre of trial and technology design. The practice of patient centricity can draw
inspiration from user-centred design in other industries. It’s first about deeply understanding patients, their journeys with disease and their needs. The literature on patient experience in clinical trials makes some patient needs clear: • Travel is a significant reason patients drop out of studies
• Most patients and trial participants want to see their providers, at least some of the time
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