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The Consumer Revolution
As industry truly starts to listen and react to the voices of the people who take its medicines, a more nuanced, insightful picture is emerging about what patients want from pharma and its medicines
Words have power. Words can move mountains. Words matter. We know this instinctively when we listen to a moving speech or when we hear hate speech. We know how it feels to be on the wrong end – or the right end – of powerful words.
‘Patient’ is a word of power for the pharma industry, in fact, it’s transforming companies, turning everything on its head. Yet, for an increasing number of the people we are using this term to describe, the word itself leaves a sour taste in the mouth, with many preferring ‘person’ or ‘consumer’. For them, a ‘patient’ is the passive recipient of care but a ‘consumer’ is an active seeker of the best products and services.
“Patients are tired of being called ‘patients’,” says Margaret Long, Vice President, Business Communications and Stakeholder Engagement, at Astellas Pharma. “Recently, we’ve heard from the patient community that they want to be recognized as someone’s mother, sister, father, brother. Some may be dealing with a chronic illness for the majority of their lives, so they simply cannot consistently think of themselves as a ‘patient’ and they want other people to start recognizing that they are more than a ‘patient’, that they are people too.”
Understanding that people are both patients and consumers is essential, adds Cheryl MacDiarmid, SVP and Business Unit Head US Primary Care, at GSK. “On the one hand, a patient who is suffering from a health condition lives with the feeling of not being well every day, and approaches their healthcare journey with an ‘I need help’ mindset, relying on others for information to help them feel better. On the other hand, patients are always consumers, searching for information just as they do in any other part of their lives. They are more demanding and more purposeful in their search, and they do not rely as heavily on others to provide them with information. There is a dance between the behaviors of ‘patients’ and ‘consumers’ and it’s quite important that we, as an industry, understand both.”
Giving up control
Yet, making decisions about your own healthcare is not as simple as buying a car or booking a vacation. “Healthcare is incredibly complex and it would be naïve to suggest that anyone is entirely capable of fully informed decision making alone,” says Long. “We have to think about the patient holistically and ensure that we consider what is important for them. We need to recognize that we may not always be the deliverer of the message and understand that supporting the patient means doing it across the entire continuum, every time they, their family, their caregivers are touched by healthcare.”
However, medicines are only one element in the equation, says Kabir Nath, President, North American Pharmaceutical Business, Otsuka America, Inc. “The medicine is a small part of the patient journey; a schizophrenic patient, for example, has an extraordinarily complex relationship with their healthcare system and with society at large. We have to acknowledge where we sit in the overall scheme of people’s interaction with their healthcare system.”
For Nath, the days of most patients as fully empowered and independent ‘consumers’ are some way off. “The reality is that the majority of people do not even manage the non-drug interventions that provide for their better health, for instance, the lifestyle and diet changes that would help prevent or manage chronic disease more effectively. We’re talking about a subset of patients who are deeply interested [in their healthcare]. The idea that patients en masse are going to take control of their health any time soon is simply unrealistic. Yes, patients, their families and caregivers want more information, yes, they go to the internet for that, but I’m not sure the majority are ready to abandon professional guides any time soon,” he says.
In addition, millions of people are making decisions about their healthcare based on financial pressures. “Right now, people in the United States are making healthcare choices, for instance, choosing generic over branded medicines because of access issues such as copays. That economic decision is already here, unfortunately, and it is far from clear how this will evolve over the coming years. While the premise of the Affordable Care Act was to bring some of the 43 million uninsured in and widen the pool, so potentially lowering costs for everyone, in practice, because of some of the design and execution elements, in some cases choice has fallen and costs risen, for example, through high deductibles and copays,” says Nath.
It’s good to talk – and listen
As some patients struggle to find their place in the healthcare continuum, how can pharma companies support them? “People want amazing medicines. They want us to be unbelievably transparent around the qualities of the medicine, and the safety and side effects. They want us to help them make the right decisions. They want responsible pricing and access to our medicines,” says MacDiarmid.
“This is about having a high-quality, honest conversation around a medicine. Historically, this used to be quite one-way, with information coming at them from pharma or via their HCPs. Today, they want the same high-quality information but they’re looking for it in digital ways. Patients are also looking for more dialogue when making a choice about a medicine, they want far more information on the experience of taking the medicine and information on how to access it, including help with challenges they might have around payment. We are on a journey towards much greater dialogue and conversation with patients.”
Everything starts with understanding patients’ needs, says Astellas’ Long. “We recently launched a new department called Patient Experience, a group focused on ensuring that we really understand the patient experience and that we, as a company, meet patients’ needs. For example, are we providing support materials that are easily understood by the patient community? This new department, along with our stakeholder engagement function – the company’s face to the patient advocacy community – are aimed at better aligning the organization around what patient experience means to Astellas.”
For GSK’s MacDiarmid, pharma companies need to learn new tricks. “We are working very carefully to understand the exact pain points in the patient journey and then be able to use innovative thinking and technologies to ease them. The pharmaceutical market is evolving at a fast pace, so there is a need to be faster and more agile to stay ahead. Within GSK, we are adapting to this ever-changing environment and there is real receptivity to being different and to trying something new.”
Listening to and engaging with patients on an individual level can be very helpful in understanding the patient experience, says Long. “We always start our quarterly Town Hall meeting with a patient speaker, but recently our speaker was also an Astellas employee, so it was doubly impactful. He said something that really resonated with everyone in the audience – that, as he was going through cancer treatment, he saw no distinction between improving the quality of his life and saving his life. His treatments were so difficult that, at times, he was struggling to make it to the next day. We often think we understand the struggles of our patient but to hear it from a patient’s mouth definitely puts a different perspective on it. He also shared that a friend said to just live to the next day, because you don’t know what ‘they’ will come up with next. We are the ‘they’. Our commitment to innovation and advancing the science is critical but when you hear it from a patient, it is so enlightening that it changes your view.”
Kabir Nath and Cheryl MacDiarmid will be speaking at eyeforpharma Philadelphia on 20-21 April.
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