“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 patient 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 question marks around whether the reality has finally caught up with the rhetoric.
The jury is still out on whether pharma can yet lay 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 Expert 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 VIP 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.
#1. Engage early, engage long
The logic for patient-centricity fits perfectly with pharma’s overarching goal. “We are all in this industry to improve patient outcomes, and patient-centric thinking is an essential part of achieving that,” said Fiona Hammond, Managing Director, Hamell.
“Patients are ultimately the end user, so their views, preferences and experiences should drive everything we do from drug discovery and clinical trial design right through to all the different attributes of support beyond the pill. It’s great that patients are now getting involved in the design of protocols and recruitment materials for clinical trials but if we really want to improve patient outcomes, their involvement must begin even earlier.
“When drug discovery is based on what’s important to patients, we’re better placed to design trials that assess the effects of a drug against that parameter. That’s the foundation of improving patient outcomes. It’s happening in little pockets, but it needs to happen everywhere.”
#2. Walk the talk
As the saying goes, it’s good to talk, and there’s growing evidence that pharma companies are at last bringing patients into the conversation. But real progress is about much more than words. “Patient-centricity is not just about ‘talking at’ patients, it’s about involving them in every aspect of their care from beginning to end,” said Gretchen Goller, Global Head of Patient Recruitment and Retention Solutions, ICON plc.
“There are glimmers of hope that we’re moving the needle on this, but pharma companies still have some way to go before it’s truly part of their DNA. The gold standard companies – the ones that are doing a really good job of this – are going beyond just talking to patients, they’re listening to them and ensuring that the information they learn informs their clinical trial protocols.
“They know that unless they truly understand the patient’s world in the disease states they’re working in, they’re just pontificating and they’ll never understand that lived experience.”
#3. Look beyond the disease
The best patient engagement focuses on the person not the disease. “Patient-centricity is about providing care for the whole patient, rather than just focusing on the condition,” said Angela Duffy, Senior Director, Research Partnership.
“Companies are starting to make patients central to their development plans, but there’s still a long way to go. Market research can play a huge role in getting that vital 360° view of the patient. The most effective companies rigorously map the patient journey to understand the whole transition through a disease, from first symptoms to diagnosis, treatment and maintenance.
“They then strengthen that understanding by talking to patients, caregivers, advocacy groups and families to identify not just the practical aspects of living with a disease, but also the areas where emotional support is needed. Getting that holistic view is essential, because it’s only by understanding what ‘value’ looks like to a patient that companies can develop services and solutions to help them.
“More often than not, ‘patient value’ isn’t just a clinical outcome – it’s a lifestyle consideration that companies may not see if they don’t have that granular view. The only way you can get it is by talking to patients and doing detailed insight work. It’s happening, but we need to see more.”
#4. Make it relevant – and make it the default
Even during the clinical development phase, true patient insight also considers much more than the medicine. “Understanding things like side effects and preferred modes of action are obviously super important, but we have to look further than that to know how a disease impacts a person from day-to- day,” said Gretchen Goller.
“We can give patients a long laundry list of solutions, but if they don’t match their needs or solve real-world problems, they’re worthless. The good news is we’re seeing more and more patients invited into discussions, with companies establishing patient panels and advisory boards to inform all aspects of drug development and commercialisation.
“Everybody’s working hard to get this right. The next step is to make it the default setting. Patient engagement shouldn’t be an annual event or a quarterly initiative – ‘patient vignettes’ must be present and obvious in all our thinking. If companies are going to make this work, patient-centricity must shift from being transactional to being pervasive, fundamentally changing processes from beginning to end.
“For example, if you’re planning your pipeline and your research, is talking to patients now part of every single protocol you write? If it isn’t, it should be, because we cannot be selective. Patient-centricity must be in the DNA of everything you do.”
#5. Co-create – and involve HCPs too
“Partnering with patients from A-Z is crucial,” said Fiona Hammond. “It’s important that every communication is co-created not just with them, but with all the other stakeholders from the healthcare ecosystem too.”
“The most effective companies are 100% dedicated to involving patients from the very beginning; they do behavioural research to understand the patient journey, identifying all the touchpoints along the way and what needs to be done at every point. Mapping that journey in partnership not only helps uncover unmet need, it can also highlight disconnects between patients and HCPs that need to be addressed through communications.
“We see study after study where communication between the two parties breaks down because they each have a different understanding of a disease and its impact. By working together, companies can co-create patient communication materials that speak in the patient’s language and fundamentally work because patients feel that their voices have been heard and valued.
“Ultimately, through patient-centred thinking and true collaboration, pharma companies can facilitate better patient/ HCP consultation with communications built on deep behavioural insights that help overcome pain points and improve patient outcomes.”
#6. Lose the fear – and embrace the opportunity
Unfortunately, there are still some companies out there that are nervous about talking to patients, with many fearful that the aims of market research might be misconstrued. “The research industry has advanced significantly, with technology transforming our opportunities to engage subjects and build deep behavioural insights quickly, effectively and compliantly.
“However, despite this – and despite market research being a familiar everyday experience in the consumer world – misplaced fears around regulations have spawned apocryphal tales around patient engagement that prevent some companies from making the most of the opportunity,” said Angela Duffy.
“Standard research practices like incentivising respondents are perfectly possible in healthcare if approached properly. Leading pharma companies recognise that without patients, they don’t have a business, and so instead of regarding patient engagement as a problem, they see it as an obligation and an opportunity.
“Today’s patients have powerful tools at their disposal and are more determined than ever to engage openly in discussions around their health. If we’re going to do our best to help them, we need to capture that insight and use it to care for the whole person, not just the disease.”
#7. Next generation patient-centricity
The journey to true patient-centricity remains ongoing, but while companies slowly adapt to new ways of thinking and working, ongoing disruption in the wider market means that pharma doesn’t have the luxury of time. Future models of patient-centred care could be taken out of the industry’s hands unless companies seize the initiative.
“We’re on an evolutionary journey with patient-centricity,” said Dennis O’Brien, CEO, Lucid Group. “When the term first became mainstream, about 15 to 20 years ago, it was all focused on getting patient insights to inform how we marketed brands.
“All that classic stuff around understanding the patient journey, the cost of disease and unmet need was incredibly helpful, and it still is today. But we need to go further. The next generation of patient-centricity has to transition from patient-centred ‘marketing’ to patient-centred care.”
The days of pharma companies playing in 15 different disease categories are receding as portfolios increasingly adopt a more specialist focus. That focus, said Dennis, presents a huge opportunity to broaden the scope of patient- centricity.
“Traditionally, companies have tended to support patients in the run-up to them being eligible for one of their medicines and stayed with them in the months beyond first prescription. Communications to patients have reflected this approach.
“However, the next generation of patient-centricity could see companies establishing themselves as category leaders by extending patient support beyond that narrow window of opportunity, to caring for consumers right through the disease life cycle; prevention, diagnosis, management and maintenance.
“For example, if an organisation wants to be the category leader in oncology, the most patient- centric could provide services that support consumer care in cancer irrespective of whether a patient is eligible for one of their medicines.
“It’s ambitious – and arguably anti-commercial – but if pharma doesn’t make the transition, there’s a risk that someone else will disrupt the market,” said Dennis.“The world’s evolving. Whether you’re Facebook, Uber or anyone else, every business wants to communicate to the user, because it’s a great lever for commercialisation.
However, if pharma companies are only interested in a tiny proportion of users, their ability to influence care will be significantly impacted if someone else is controlling the communication.
“It’s a huge strategic question: do companies want to improve outcomes in a given disease area, or do they simply want to commercialise their medicines? If we’re genuinely interested in patient-centred care, that care needs to start long before a medicine becomes relevant and continue for the duration.”
It’s a sobering thought. As technology continues to reshape customer experiences, pharma needs to find new ways of engaging end-users to ensure its products and services match consumer needs and expectations. Putting patients at the centre of care is easy to say but far harder to deliver.
As Ron Cohen said in 2016, patients are rightly demanding a greater say in the care they receive. But as we move into the 2020s, there remains an uncomfortable disparity between the rhetoric and reality of patient- centricity. It’s time to mind the gap.