In a few weeks' time, the eyeforpharma conference will focus on one of the most talked-about issues of the past 12 months – patient-centricity. PharmaTimes spoke to three keynote speakers to find out what putting the patient at the centre means to them and their companies

For as long as I can remember, companies have flirted with the idea of getting closer to patients but only now does it feel like the time has come for patient-centricity. But why now and what are the benefits? More importantly, what are companies doing on the ground to engage with patients, and what are they doing with the information they collect? We put our questions to three senior executives in the pharmaceutical industry. 

"There has been a sea change," says David Epstein, CEO Pharmaceuticals at Novartis. "I can't tell you the reason for the change but I do know that there is a lot more we can do to be truly in touch with the needs of patients. We need to work out how we can bring innovation together with a more patient-centric approach to help patients live longer and better lives, but this will need cultural change inside big drug companies. In fact, patient-centricity is not exactly the right term; it's more about working side by side with patients." 

For Jane Griffiths, EMEA company group chairman at Janssen, the more we can involve patients the better. "We are incredibly patient focused, it's in the first line of our credo. Paul Janssen's mantra was that the patients are waiting. But what does that mean? It means designing protocols for trials by asking patients what outcomes are important to them and it means partnering with patients to understand disease pathways by asking what's it like to be diagnosed with a condition, how many tests did they have, how many times did they have to go the hospital? All of these things need to be figured out for the future, not only for more patient-centric therapy but because it will reduce the cost of healthcare delivery and benefit society as
a whole." 

Yet, pharma is just one piece of the puzzle, she says. "While industry can certainly do more, healthcare delivery also needs to involve patients more than it has in the past. Again, health technology assessment sometimes fails to consider patients' opinions, even though they might say a certain product improves their quality of life beyond belief. Clinical is important, of course, but we've got to think about patient-related outcomes in payer evaluations." 

"We have learnt so much from patients," says Gitte Aabo, president and CEO of LEO Pharma. "Our philosophy is to help people achieve healthy skin and if you understand the patient and customer the business will follow. If you listen to the CEO of Amazon talking about how they obsess about customers, I want to see the same kind of philosophy penetrating LEO." 

While companies across the industry are gearing up to engage patients in a huge variety of ways, there is one key factor to consider, says Griffiths. "There is a difference between having the patient in your heart and actually asking them what they want at every stage of the process. We have to ask how do they like to be communicated to, what outcomes they want out of the trials and what side effects bother them most. The good news is that the rules of engagement with patient advocacy groups are much clearer now as they have better governance and the interactions are better organised and regulated, which allows for a more constructive dialogue." 

Focusing on the individual 

Once companies have seen the value of patient engagement, how have they gone about developing a strategy? For Basel-based Novartis, inspiration struck, perhaps not unsurprisingly, at the top of a mountain. 

"I took my executive team up a Swiss mountain where the air was thin and the sun was shining and they started to recount personal stories about their experience interacting with patients," said Epstein. "It was totally unprompted but we spent the next day writing out what became the Novartis Patient Declaration, delineating our aspiration of what patients could expect from us. Last summer, we brought together 60 patient organisations in Basel to get feedback and we've subsequently used it to change the culture inside the company to help us be more inclusive, innovative, collaborative and to speak out more and take more risks in order to help patients." 

LEO developed a unique strategy for 2020 called Helping Sarah, says Aabo. "When you talk about 'patients' it can almost sound like a single blurred mass of people but patients are individuals living individual lives with individual needs. It is crucial that we understand that people living with a chronic skin disease like psoriasis don't think of themselves as patients." 

As part of the strategy, LEO has delved deep to better understand Sarah. "Patient insights tell us that we need to be practical and ensure our treatments are easy to use in real life. For instance, if you have psoriasis on your scalp then it's not very easy to deliver the right dose if our treatments are supplied in a standard tube or bottle. Like everyone else, Sarah needs to get up, get dressed and go to work in the morning, so it's vital that any treatment is absorbed quickly as there is no way she will get up an hour early to take her psoriasis treatment. It may sound simple but the focus on the individual person has had a tremendous impact on how we act as a company." 

At Janssen, ensuring the company is truly patient-centric involves two main elements, says Griffiths. "It's important that the leaders in the organisation have their hearts in the right place and that patients always come first. When you have an issue with a brand – let's say a quality issue like the one we had in the US many years ago – and you know that withdrawing a product from the market while you sort it out will hit your sales but you make the right decision for patients. 

"Secondly, we are structuring ourselves so that each franchise is focused on patients and that we work in a similar way across the disease areas. We are already very patient-centric now, but we could be better at how we organise ourselves," she says. 

There are larger reputational issues at stake as well, says Aabo. "The pharma industry is not considered trustworthy and as an industry we have a big job to do to really build that trust. In my opinion that can only happen by being completely transparent in what we do, whether that means sharing the results of your clinical trials, which we at LEO have done all the way back to 1990. Partnerships are also crucial; one company driving the sales of its own product loses credibility but partnering widely with patient associations, other industry and HCPs, gives you a completely different sense of credibility," she says. 