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Novartis’ Bold Vision to Change How the Entire Sector Engages Patients

A bold new vision for patient engagement at Novartis is underway led by Marc Boutin, JD, the Global Head of Patient Engagement, who is fearlessly driving change to align the needs of patients and industry.

October 24, 2023
Novartis’ Bold Vision to Change How the Entire Sector Engages Patients

What are your thoughts on patient centricity as a goal in pharma companies? 

I don't think there is any company that's truly patient centered, because people confuse thinking about patients as being patient-centric. While there is no one definition, generally people believe that patient-centeredness is about engaging with, understanding and co-creating with the patient community. In the end, it’s about doing “with” not “to” or “for.” I don't believe that there's any company that is in that space yet. In the life science industry, we have amazing, incredibly talented people who are making life-altering medicines. That is wonderful, but that doesn't make you patient-centered. It isn’t patient-centered until you’re doing it with the community, not to or for. But with how we're evolving in patient engagement, we're getting a lot closer. 

I'm here as an extension of my advocacy role, to change from within how industry works. I came to Novartis not to just change how Novartis does patient engagement, not just to make it the industry leader in patient engagement, but to change how the entire sector engages patients. If all the largest pharma companies were engaging patients in the right way, we'd be developing data, evidence and insights. We could put them in the public domain, for regulators, healthcare systems, publications, etc. That would truly impact the entire health ecosystem. 

"It isn’t patient-centered until you’re doing it with the community, not to or for."

How has the way Novartis engaged patients changed since you joined the company? 

It has changed quite dramatically. We were a decentralized patient engagement model. We had people doing patient engagement embedded across the entire company. We centralized the model, and we now have nearly 1000 people doing patient engagement on the global, regional and country levels. We have implemented a strategy focused on three elements. The first is creating/co-designing patient relevant endpoints in all of our research. The second is to co-design our clinical trial protocols, so that we can enroll faster and retain longer. And then third is to make sure that any consumer-directed or -facing interface as we commercialize our products are co-designed with the patient community. 

It means that we make better products faster, and get them to the right people. We implemented a five decision-point strategy and a progress tool. With that strategy, we now know across more than 100 assets and indications exactly what we have done and what we need to do. 

Can you walk us through that “five decision-point strategy?” 

We identified the five most important decision points that happen within Novartis along the lifecycle of medicines development. Then we identified what the most important, patient-relevant data evidence or insights that would inform those decisions would be. We created a methodology to generate that information in advance of the decision, and embedded it in these processes. 

Then we mapped that out at a global level and across 8 major markets generating hundreds of pages of data. And so we can walk into any cross-functional team we work with and say, “Here's what we've done. Here's what we haven't done. From this point on, this is what I can get to you.” 

What have you seen since the implementation of this strategy? 

As we begin to measure, we’ve seen, first, that the activity level in the last 9-10 months has exponentially grown in terms of patient engagement work. That is a dramatic increase. 

We’ve also begun to measure the quality of the engagement. We’re working with the patient community, during, when and after we engage them to ask, “What can we do better?” We're also measuring, from the perspective of the Novartis associates across this continuum, what is working for them. Was it the right information? Was it getting to them in the right time frame? Was it relevant and did it help your work? 

Lastly, we are beginning to measure the outcomes: did the data, evidence and insights change the decision-making and was there an impact on patient outcomes or the business.

"We’ve also begun to measure the quality of the engagement. We’re working with the patient community, during, when and after we engage them to ask, “What can we do better?”

And has it changed decision-making? 

We’ve had instances where clinical trial protocols are Designed to reduce patient burden. How we do our consent forms is shifting. Whether we even develop a product is being changed. Sometimes the researchers think the patient wants it, and they don't. Other times the researcher thinks the patient won't want it, but they actually do. 

We're beginning to measure the impact. We're beginning to see situations where practice guidelines change; diagnosis happens faster; the patient actually gets the product in a quicker manner, and in a way that they can actually use it and be more adherent. We've also begun looking at how to measure the net-present value of some of these activities. If we can shorten a clinical trial by three or four months, that creates huge value for patients and for Novartis.

Can you give an example of one of those key decision points, and the patient insights that were generated to inform that decision? 

Target product profile is a really good decision point where you're trying to figure out exactly what the target for this product is. What is it going to look like from the perspectives of many different stakeholders? How are you going to design and develop this medicine? 

When we do good patient engagement there, we start to find out that what's important to the researcher or the developer may be very different from what's important to the patient. Then we align it accordingly. You start to look at examples where the medicine is something that is going to work from a science perspective, but the outcome may not be one that's most important to the patient, or you begin to think about how to refine it to meet the patient's needs. 

Is there a challenge in getting those patient insights taken up by teams?

That gets into some of the cultural change and mindset changes that still need to be done. The earlier you go in the life cycle, the more pervasive they are. Having said that, I'm operating in a scientific culture that likes data. At a global level and in 8 countries, I have nearly 2000 pages of data that show what we've done and what we haven't done. 

While I can't prove causation, there's a pretty strong correlation when I look at the clinical trials that had no patient input into their design and them not enrolling, and the ones that had really good patient input and co-creation, and they're enrolling ahead of schedule. I can't prove the patient engagement did that, but if someone is seeing that pattern play out over and over again, it becomes hard to say, “Patient engagement doesn't matter.” As a result, people start to think, “Maybe I've got to do this.” Teams may begin as disbelievers, but that changes quickly when they see this in play. 

Can you give an example of how patient engagement truly impacted a course of action in the medicines development process? 

We were looking at gene therapies that can make a huge impact on blindness. When the researchers presented this to the patient community, they were astounded. People who had been born blind and lived their whole lives as productive people while fully blind did not necessarily want this treatment. It was unlikely they would take it. The more likely candidate was someone who had lost their sight during their life and wanted it back. That's a huge insight that we need to understand if we're going to develop the right medicine for the right audience and eventually get to that target product profile. 

What did that engagement change about your understanding of the indication? 

Your patient population may be larger or smaller than you realize. You will only know that if you engage and figure it out. I would suspect that with folks who are blind, the situation will eventually evolve into something very similar to what happened with cochlear implants: that is nobody who has lived their life as blind person is really going to want this treatment. But the parents of children born blind, will. They will want their kids to have it and grow up with some level of sight. Again, you start to understand what is your present and future audience for this potential therapy.

How do you impress the impact of patient-centric initiatives, in such a scientific environment? 

First, we now have the data to show what we've done and what we haven't done. As we dig into that data, you start to see these correlations, which offer a lot of support for what I've been saying for two decades now. It encourages people to take action. 

Second, I share stories from the patient community and from my own personal experiences, and the people we're engaging. That helps people to connect to why this is important at an individual and subpopulation level. 

Third, I look at the results we're getting. We're able to show significant impact in a very short period of time, in an organization that really focuses on impact based on numbers. They are looking at impact over a quarter; that doesn’t give me a whole lot of time to show impact, but two years in, with 10 months of data and impact work, we’re beginning to show it. 

What is your advice for folks who are implementing patient-centric strategies in their own organizations, especially those with limited resources? 

First is finding a way to measure the impact to the business. Because without that, there's no reason for you to exist other than a charitable act or from a reputational image perspective, neither of which will give you the clout or the staying power you need to demonstrate that this can have a huge impact on the business over the lifecycle of a therapeutic. 

Second is to secure buy-in through a grassroots effort. We engaged about 30,000 people from Novartis in the strategy. My team and I participated in leadership team meetings, town halls, etc. We did literally hundreds of them. We created a very comprehensive survey that took about 40 minutes to complete. We were really worried that nobody would complete it. We had a significant response. Then we engaged every member of the executive committee multiple times, to the point that when our strategy was being submitted to them to be approved, they said, “It's good, we've all seen it.” That's never happened at Novartis. 

Those are campaign-like strategies that work quite well inside a company to create that momentum and support. That creates, in each person, some level of ownership. It’s their strategy, not just my strategy. 

For more information on Patients as Partners, visit patientsaspartnersconference.com. And to hear more about Mr Boutin's work at Novartis, click here.

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