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How companies are scaling up their patient-centric efforts

By Hugh Gosling on Dec 12, 2018

There is no one-size-fits-all model for pharma companies seeking input from patients. There was no blueprint when companies took their first tentative steps a few years ago and there is none now as they enter the next era – scaling up patient-centric efforts to become business as usual.

“When I talk to patient organizations, many times they ask, Why does wanting better patient outcomes require a culture shift in pharma?” says Laura McKeaveney, Head of Global Patient Advocacy at Novartis. “But that’s not what requires the culture shift.”

People who work in pharma want better patient outcomes, she says, “but if you look at our models, for 150 years we’ve had the healthcare professionals at the center of our universe, then the regulator and the payer community entered into the healthcare ecosystem. Now, with the rise of the patient movement in the 1980s and 1990s, we have a new stakeholder group. This is an evolution and we ought not to be too hard on ourselves.”

Yet, with the plethora of patient-led research that is “driving very deep insights” into how pharma would have looked if patient insights had been included from the beginning, the time for action is now, she says. “It shouldn’t be a choice anymore; if you want to optimize value in the system then you’ve got to make patient engagement fundamental to your business.

“These trends are irreversible; the patient movement isn’t going to go backwards, the regulators are increasingly providing guidance to bring patient insights into decision making, and payers are becoming more interested because they want drugs to deliver outcomes that matter to patients and clinicians. None of that is going to change, if anything it’s going to get stronger,” says McKeaveney.

As with many aspects of the patient-centric transformation of pharma, from the outside, scaling up efforts seems like a no-brainer. The evidence of the benefit to all parts of the health ecosystem is swelling, external pressure is building, internal experience is growing, so what’s holding companies back?

A fundamental barrier is a lack of understanding around what patient-centricity is, says Jill Donahue, author, speaker and cofounder of the Aurora Project. “Many think it is programs, and expensive programs at that, which belong to one department.”

This results in them seeing it as a “granola issue”, she says. “When everything is going well, we can do patient-centric initiatives, but when things get tough, budgets dry up. I wish everyone knew about the incredible research proving that purpose-driven/patientdriven people, brands and organizations are far more successful. Patient-centricity and profitability are not incompatible; they are inseparable.”

Patient-centricity is far more than just patient-engagement programs, she adds. “It is a cultural shift. It is about connecting each person in the organization to the difference they can make for patients. When we instill the power of purpose, it’s like releasing the hounds.”

With champions spread throughout most pharma organizations, is it the case that the pressure is bottom-up rather than top-down?

“If you sit in front of a senior leader and say, We need to think about the patient. They will say, Sure! But I don’t think they would ask the question, How? There are still some old-school folks out there,” says Jay Graves, VP Sales at Roche Diabetes Care Inc. “However, at Roche, our CEO talks about the patient a lot. He’s been instrumental in making smart moves with our businesses where there always needs to be a reason why we bring something to the patient. If we build a device, it needs to support the drug in a specific way, increasing adherence or safety or another patient benefit.”

When speaking with senior leaders, Pooja Merchant, Head of External Medical Affairs at Bayer, prefers to use different language. “The [expression] patient engagement is not always clearly understood by senior management since patients have always been a fundamental motivator for the industry, so we approach it by saying that we’re bringing design thinking to science. I rarely say patient engagement, rather I say partnering with patients to design around user needs.

“Design thinking aligns teams towards a goal and promotes a faster pace of work, reduces development time, builds relationships directly with patients, improves product outcomes and lessens the risk of costly failures. When you show value via such an established methodology, it’s more effective than using loaded terminology.”

While efforts are underway to measure the impact of patient input into pharmaceutical operations (see Made to Measure), metrics are only one side of the coin when selling a patient-centric approach with colleagues.

“We drive the projects then we ask the teams to come and share what they learned,” says Merchant. “We have them present at town halls, create a report, make a video, anything to create a snapshot of what they learned, what inspired them, what changed in the way they started to approach their project. When someone in your group shares how they did it, it shows that it is possible, and more teams start thinking about it. You can also share it widely across functions and therapeutic areas.”

“For me,” says Graves, “it is about keeping the patient front of mind – that’s how it permeates through an organization. For example, at the office, instead of a sales area and a marketing area, we have areas named after patients with diabetes who we know personally.

So, as you walk through the building you see the stories of these patients – you’re literally surrounded by patients. It is far more effective than someone standing on their chair once a month to say to remember the patient. It helps it become ingrained.”

Paul Robinson, European Lead, Patient Innovation at MSD (known as Merck in the US and Canada), quotes long-time chief patient officer Lode Dewulf. “He says it’s like being a parent – you can learn what’s it’s like in theory and you can watch your friends doing it, but it’s not until you become a parent yourself that you understand all the nuances, joys and tribulations. It’s the same with this – you can subscribe to it in theory, you can see your colleagues doing it, but sooner or later you have to give it a go yourself, you have to sit down with a bunch of patients and find out their perspectives. Once you’ve done it yourself, you become one of the advocates.”

Different Approaches
Creating a wave of patient-centricity that ripples through an organization converting all it touches is not an easy task. How a company goes about creating the culture shift depends on both how the company approached the patient-centricity project in the first place and what it has learned along the way.

“In 2015, Novartis launched what was called at the time the Patient Declaration,” says McKeaveney. “However, a key piece of feedback from the patient community was, We loved it but what’s happened as a result? This started us thinking and, in 2017, Vas Narasimhan – now our CEO but then Head of Global Drug Development – asked me to bring the Patient Declaration to the next level, to make it more relevant and meaningful for where we were as a company. The first thing we did was engage with the global patient community (which we did not do with the original declaration) to get additional insights and to co-create Our Commitment to Patients and Caregivers.”

Through dialogue with the patient community, the new Commitment sets out what the community could expect from Novartis across four pillars; respecting and understanding the patient community perspective, expanding access to our medicines, conducting responsible clinical trials, and recognizing the importance of transparency and reporting.

Previously focused on patient activation and disease awareness, more recently Novartis has increased its focus on early research and clinical trials. “The reality of involving patients with early research is that there is a difficult point – the go/no-go decision that is frequently encountered. However, our teams realized that if we made building sustainable, long-term relationships with the patient community one of our key measurements, then your ‘exit strategy’ – for want of a better expression – with the patient community at the go/no-go is part of that very respectful, trusting relationship,” she says.

In order for such a relationship to start, however, “deep discussions” are required for every clinical program to ensure it has a robust, clearly articulated patient engagement strategy before going into clinical program launch, adds McKeaveney.

Contrasting with Novartis’ visionary approach, Bayer’s strategy has focused on fostering support among rank-andfile colleagues. “Our journey has been slightly different from others because we did not nominate a chief patient officer or establish a specialized function but rather we took a grass roots approach,” says Merchant.

A cross-functional network called Patient Insights and Engagement (PIE) puts champions in every function from early research to marketing. “We call it a movement because it’s not an initiative or a function – it gets everyone, no matter where you are in the company, thinking about what they can do directly to bring in the patient perspective.”

She admits that it takes longer but they have now reached the point where the vision is built and there are teams in place to drive it in their functions. “Now we’re at the stage of building more training tools, more capacity, and just doing more. I believe that you can only learn what works and what doesn’t work by doing it.”

The company rolled out a framework earlier this year along with actionable tools – checklists, questionnaires, etc. – and case studies to enable colleagues to run their own patient advisory boards. “It’s not about investment that will disrupt, it’s about changing behavior, and I don’t think you can do that without connecting to what drives people. That’s how you build critical mass. It has been really fulfilling to see what happens when you bring people together with a common purpose and passion. It’s really powerful.

“We’re at the stage where we’ve designed directly with patients several times and people want to do more, so we are focused now on becoming more strategic and identifying the touchpoints in our decision making where we know we should not proceed without having a dialogue with patients,” says Merchant.

At MSD, Robinson is one of four regional champions. “We are making huge efforts to engage with patients in our development processes, and part of that is the creation of a small patient engagement team to drive the change in culture and behavior. I have colleagues in our other three regions – Latin America, Asia Pacific and the US – because you really need champions to bang the drum and to hold colleagues’ hand while they do it for the first time. Ultimately, the hope is that you won’t need people like me and it becomes business as usual because everyone believes it’s the right thing to do and does it automatically.”

The signs are positive, he adds. “I am encouraged by the number of clinical teams that are dipping a toe in the water – we’ve done patient input in cancer, with a vaccine, in Alzheimer’s, as well as in HIV where we’ve always done it. The people who have dipped a tow in have found it to be extremely helpful and enlightening – in many cases it resulted to changes in their plans.”

And now the pace of adoption is increasing. “We’re beginning to see it pick up speed – snowballing would be too strong a word but we’re seeing more clinical development teams asking us to help them sit down with patients. I don’t think we’re out in the lead, as a company, and we’re not all the way there yet, but demand is increasing and we’re working on how we can satisfy that demand.”

While most companies are focusing their efforts in the clinical sphere, patient-centric practices are needed throughout organizations. A key area for the entire industry is ensuring patients get access to its innovative medicines as quickly and efficiently as possible.

“I’ve seen patient testimony at HTA meetings that have a huge impact on the outcome,” says Robinson. “However, we need to ensure we are aligned with what patients value.”

He states an ideal scenario where a company outlines its drug’s actions (A, B & C), the clinical expert says A & B are important and the patient says that it is B & C that keeps them up at night.

“When the committee hears a consistent story, it makes their job easy – the decision might be ‘no’, of course. However, if the patient says it’s X & Y that keeps them up at night, and there’s no data on how the drug affects X & Y, it introduces uncertainty, and uncertainty makes it much easier for a committee to say they’re not sure. Aligning our development with what patients need and value is highly likely to improve the product we develop and so improve the chances it will be paid for, as long as it’s sensibly priced.”

In many ways, the true test of the patient-centricity project is whether it filters through to customer-facing commercial functions – a long way from the roots of the movement in clinical. Patient contact is very important for sales reps, says Roche’s Graves. “In sales, you’re out there on your own; you’re on your own island, day in and day out, and you might only see one another once or twice a year. Ever since I started down this path, I have strived to get reps close to patients. Many of our reps have been around diabetes for so long they are as knowledgeable as some physicians, but it is good if they can relate patient stories back to clinicians, especially those who don’t see many diabetics.”

Graves encourages reps – as well as HQ staff – to spend time at diabetes summer camps. “If a diabetes rep wants to go to a diabetes camp, I support it and I won’t charge them vacation time. There’s also a camp very close to our headquarters. It’s amazing to see the kids playing in the pool or running around like any other kid or sitting out by the campfire while also wired up to devices. It allows you to understand what is meaningful in their lives and that what you’re selling is important, that without it they may not have been able to go down to the lake that day. It’s those kinds of things that keep the patient very much alive for us.”

Focusing on patients can result in highly productive customer (or rather, partner) engagement, says Donahue. “A KAM told us that adopting a patient-focused mindset totally changed her results. She described a formulary meeting where normally the committee sits with their arms crossed and gives you 10 minutes to present your data. Because she decided to share her ‘purpose story’, she gained their trust. The meeting went on for an hour and they booked another meeting for the next day.”

At the end of the process the treatment option was placed on the formulary (bringing $2m into the company) and patients were better served. “Sharing examples internally helps people ‘get it’.”

Celebrating internal success is important but sometimes the most powerful validation comes from patients themselves. “Recently, a patient with diabetic kidney disease blogged about her experience of speaking at Bayer on what it was like to be a clinical trial patient,” says Merchant. “It was totally unexpected but when we read the blog we were so excited. If patients are talking about it, then they genuinely value and care about our collaboration. It is the appreciation and recognition by external partners that really gets the teams most excited and motivated to do more.”