The ‘activated’ patient conundrum – PharmaTimes

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Patient-centricity, involvement or engagement?

Greater patient-centricity in the medicines research and development process can benefit everyone, from patients to industry to policymakers.

There are growing calls to action from the public and within pharma, and many are taking active steps to achieve it.

However, industry approaches are still fragmented and inconsistent.

In the complex and time-sensitive process of medicines development, we know patient-centricity can be seen as a ‘hurdle’, impacted by factors like lack of organisational vision, internal habits and perceptions, and lack of agreement on what constitutes a return on engagement.

There’s no widely accepted definition for patient-centricity in medicines development – terms like ‘patient engagement’, ‘patient involvement’ and ‘patient-centricity’ are used interchangeably, which can mean they’re not applied appropriately.

Frame of reference

The concept of patient involvement — giving patients a say, or role, in how research is designed and delivered – is one crucial part of a patient-centric approach.

Thanks to organisations like the European Patients Academy on Therapeutic Innovation (EUPATI), Patient Engagement for Medicines Development (PFMD) and Clinical Trials Transformation Initiative (CTTI), guidance, frameworks and standards now exist to drive high-quality patient involvement.

But to apply it effectively in the real world, other changes are needed. Current versions of patient involvement often feature patients who are already ‘activated’, or put expectations on them to become informed and empowered of their own accord.

They face the same barriers to engagement, and issues of diversity and inclusion, as clinical trial recruitment, because the organisational shift and community acceptance are lagging behind.

An increasing focus on patient involvement might also mean we miss other meaningful opportunities for patient-centricity.

The industry needs a higher-level roadmap. A framework that helps pharma to overcome barriers, assists with the change in mindset that may be needed, and facilitates the shift to a patient-first approach.

Something that lays out, in simple terms, how to enable a diverse range of patients to feed in their views, share their experiences, and inform decision-making, whoever and wherever they are. After all, it’s the people who are less engaged that we need to hear from the most.

Below, is our activated patient road-map – a strategy that turns industry’s traditional recruitment and retention funnel into an engagement journey that works around the patient.

This highlights the strategic importance of community engagement – to build willingness, trust and connections — and inclusive opportunities — to ensure anyone, anywhere can be informed, engaged or involved in medicine research and development.

While this journey broadly represents the clinical trial phase, it’s easy to expand out, to feature more steps in the trial process, or the full cycle of research and development.

With so many definitions, frameworks and standards out there, it’s difficult to know where to start. We get it. But that’s also why a patient-first mentality is key. Because that’s where applying, adapting, and measuring actionable approaches to greater patient-centricity ultimately starts and stops.

Stacey Davidson is Content Strategist at Cuttsy+Cuttsy. For more information,
visit cuttsyandcuttsy.com

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