Article: Mapping the patient journey and minding the gap: Seven steps to closing the gap between rhetoric and reality in patient-centricity

Senior Director Angela Duffy was recently interviewed by PME Magazine about the steps needed to close the gap between rhetoric and reality in patient-centricity, and why it’s vital to include patients in every step.

“When I grew up in the industry, things were pretty well set in terms of how pharmaceutical companies engaged with patients - which is to say that you didn’t engage all that much.” Ron Cohen’s reflection on ‘Pharma Past’ will be familiar to many who worked in the industry in the era before patient-centricity became the biggest of buzzwords. Speaking to McKinsey in 2016, the biotech CEO argued that a new generation of engagement was dawning. The world, he said, had changed. “It’s changed because various patient groups have insisted that it change, and rightly so. Today, patients are demanding more of a say in the type of care they get, the type of medicines that are being developed, how the medicines are going to be applied to them, and what the regulatory pathway should be.” Four years later, the patient-centric buzzword still prevails, as do the questions marks around whether the reality has finally caught up with the rhetoric.

The jury is still out on whether pharma can yet claim to being truly patient-centric. The lack of a clear definition as to what the term means leaves approaches open to interpretation and makes measuring progress a difficult task. The Aurora Project’s second Patient-Centric Benchmarking Survey 18 months ago highlighted a reality gap between words and deeds. Almost three quarters (72%) of respondents said their companies communicated ‘with care and compassion, transparent and unbiased information on diseases, treatment options and available resources’. But only 32% of patients actually agreed. Similarly, 91% of participants believed it was hugely important for organisations to have a patient-centred vision – but only 30% were confident in their company’s ability to meet their ambitions. Claims that the industry has ‘broken through’ in its adoption of patient-centric thinking appear somewhat premature.

One thing is sure, however: everyone is trying. Evidence indicates that pharma companies everywhere are trying to align their operations around the patient and remodel themselves as patient-centric organisations. Examples of progress are everywhere. In 2017, Merck launched its ‘Patient 360 Summit’ to create a patient-led platform for insight and collaboration, then subsequently introduced ‘Patient Innovation Leads’ to power innovation in partnership with patients. UCB has reconfigured its teams around Patient Value Units. Novo Nordisk has established Disease Experience Panels (DEEP), an approach based on ‘an evolving world view where people with serious chronic diseases are no longer seen as passive recipients of healthcare, but as experts by ‘experience’. Similarly, LEO Pharma’s Voices in Partnership (ViP) programme brings together people with dermatological and thrombotic conditions so that it can better understand their day-to-day impact and drive change from an expert patient’s perspective. The VIPs mnemonic is fitting; across the industry, patients in all disease categories are being anointed VIPs as pharma companies endeavour to follow one of the basic principles of modern marketing: ‘to know and understand the customer so well, the product or service fits him and sells itself.’

So how do you do it? Here are six steps to establishing an effective and enduring culture of patient-centricity – and a seventh to take us to the next generation.