Leadership Exchange: Are We Patient-Centric?
Industry experts discuss what it means to truly put patients first, where pharma often falls short and what can be done to rectify this. James Chase chairs the debate
Editor in Chief, MM&M (moderator)
Founder and CEO, Snow Companies
US Marketing Dir., Firazyr, Shire HGT
Founder and CEO, WhatNext.com
Assoc. Dir., Velcade Nurse and Patient Marketing, Millennium Pharmaceuticals
SVP, Havas Life
James Chase (MM&M): What does patient-centricity mean to each of you?
Fatima Scipione (Millennium Pharmaceuticals): I've actually seen an evolution internally with respect to putting the patient in the conversation. For me, patient-centricity is part of your fiber. I see it in my company. It's always at the table. It's about how do we support? How do we educate? How do we empower? How do we inspire?
Lyndi Hirsch (Havas Life): Lots of companies who feel that they have in the past been patient-centric actually have been more focused on how to create that drive into the doctor's office to impact physician's decision-making. But patient-centricity in my experience is about educating and supporting people who are living with diseases so that they are better enabled and empowered to make decisions. Because our area is still highly regulated—and we don't even know what the final regulations will be—I think companies struggle with how much time and money you should spend on educating and supporting patients, what their benefits are going to be by making that investment, and where the line needs to be drawn from a regulatory perspective. Centricity starts with disease education, and what I am seeing is that where there's confidence in providing good disease education by organization, there's less of a concern about investment strictly around who's the market leader. And so we're seeing big changes even on how advertising moves forward and we'll see less direct product and more in the disease arena.
Brenda Snow (Snow Companies): I agree with both of those lenses, but another one is corporate responsibility. And in some cases it really needs to be reputation management. We do a lot of good things in this industry. We do tremendous things. But I have to tell you that in my 15 years, I know that early in my career it was a badge of honor to work in pharma. That has dramatically changed where I have had people basically treat me like I was a criminal when I said I work in pharma. I might as well say that I was a banker. But patient centricity is larger. It should be external. I think if the majority of healthcare consumers, worldwide, could intimately see some of the commitments that Shire has made to their programs that are patient-focused, and Millennium, people would completely understand the value of products and also start to view our industry more favorably than unfortunately it is viewed. In today's healthcare climate, with changes in Obamacare and the payer system, it's even more important that people understand the good work that we do. Taking a novel therapeutic through an R&D pipeline, it's 20-plus years. That's a tremendous amount of money and, yes, you do have to manage to shareholders. You do have to manage the bottom line and it's a for-profit entity, absolutely. But at the end of the day, if people really knew the companies that embrace patients—not those that just say, “Oh, we've got a database of names”—I think it would help our industry tremendously.
James: Do you think, then, we're still suffering as an industry from the hangover of the blockbuster DTC era?
Nicole Sweeny (Shire HGT): I think so and I think it's not just the stakeholders and marketing. There are other members of companies who are like “In 2005, this [incident] happened”, and that's fine, but that happened historically and now we need to think of the future and build it the right way. But they're still hung up on those negative associations. I think that limits your thinking and so there's opportunity for all the companies out there to change the perception. But there's a lot that needs to change before you get to the outside world because those people that I'm referring to influence some much of what we try to do. And so if they're not open to it then it's a roadblock, so that nothing changes. No one wants to bring more on.
David Wasilewski (WhatNext.com): I think what patient-centricity means is recognizing that times are different. There's a generational shift where now today more information's available than ever, which is allowing people to be more empowered. Consumers are able to connect more than ever and now they're expecting it. Doing a forum is nothing new. But being able to get to somebody more specific because now there's all this noise out there, it's new and novel but the idea is now that people are looking for this and demanding it.
Brenda: To dovetail on that, I've actually said to companies, “We're probably not going to be a good fit for each other anymore,” because patient-centricity meant to them “Let's have a meeting and get two or three patients here, shake their hand, give them a hug, and then we've ticked that box—we did patient-centricity this year,” You don't just get somebody to come to a meeting, share their story and then their whole world is solved. They need to engage in lots of different ways. For some that's online. For some that's a webcast. For some that's face-to-face interaction. But the conversation needs to keep going and you have to be invested in it. If you're in it, you need to be in it.
David: And it needs to be balanced.
Lyndi: I've been working with a few organizations that say they want patient-centricity but really don't want to put anything into it. It comes back to helping organizations realize that their loss moving forward isn't a new-patient loss or a share-of-voice loss—it's a true adherence loss. It's going to take some time for companies to not just say the phrase. Picking and choosing to be patient-centric doesn't mean that you necessarily are.
Nicole: It also comes down to leadership at the various companies. We're held to something [at Shire] in terms of our management saying, “If we do what's right by the patient, then we'll succeed,” and that's a good litmus test for us. Whatever the initiative is, is it going to support that? And it's just telling them what to do; that's not our goal.
Our goal is to help support them and educate them and provide them with resources to help them along their journey and for them to navigate it, because they are their own advocates. And so, whether that would be assistance or education for reimbursement, with living with their disease, regardless of what it is, is it going to help them? Again, they have to process the information and they have to talk with their family members, other patients as well as with their physician and figure out what they should do next. But if we're living by that standard then I think we can't do wrong. We can't do any harm and they win because that's what the end goal should be—their success.
David: We've been hyper-focused on patient engagement and not worrying too much about monetizing this site. But you know what? We've got a really great model and now we're starting to talk to some pharma companies. But as I'm talking to all these brand managers, there's these silos. Every brand manager is about pushing their drug. And we've done a lot of questioning of patients and they don't even give pharma a second thought. Their attitude was either “They're so expensive” and “They should stop advertising and wasting dollars and save us money” or “They make such big profits.” That's what the message about advertising is sending. There's no personality behind the brand that's connecting with the consumers. Every pharma company I've talked to recently has been not terribly inspiring because they're like “Can we run ads on your site?” and I'm like, where's the balance in that? What's the value proposition? Where's the educating?
Nicole: I think you have to look and ask basic business questions because I see that big time. But we also get managed to say okay, how can we find more patients to help? So let's sit and talk about that basic business issue and get out of a brand specific, really niched issue. How can we get patients more empowered? We know there's social media. We know we need to somehow have a presence and leverage it. Let's talk about that.
Fatima: We have the same type of conversations. Certainly we have our forecaster, our sales numbers that we are held accountable to especially in a marketing function, but it's very similar in that manner and I say it's been an evolution.
Nicole: I do think there's a lack of experience with that associated knowledge base. A great example is last week someone said “Nicole, if you put in front of me a physician speaker slide presentation for other HCPs, I can review that right away. I know the clinical data and I know the rules of engagement in terms of regulatory. It's easier for me. However, if you give me anything consumer I stop.” It's just this area that's not, I think, not as well understood; it's not well defined in terms of the rules of engagement from FDA and so there's kind of a paralysis that sets in and, unfortunately, I think it slows things down or creates missed opportunities for the patient.
Fatima: You're absolutely right. They're afraid because they don't know where those boundaries are.
James: So how do you break out of that?
Brenda: I think patient-centricity speaks to that. Once they see a compliant patient program or a compliant patient story, it's like “Oh, what were we afraid of? This is great. This is the best thing we've done.” So more interesting to me isn't the question of what the FDA is saying about external patient promotion. It's why has every company become so risk adverse and so afraid? It's like something horrible is going to happen if you talk to patients. But if you do it in a compliant fashion, probably nothing.
Nicole: At one of the patient training meetings for ambassadors recently we had individuals from the home office and they were in front of the patients. The patients started to ask questions. This comes up weekly at all our meetings and we say, “These are the questions they have.” But it's different when you're in front of the room and you have to address it and you realize it's a sincere question and it's real and it really does need to be addressed. I think we become irresponsible if we decide it's a question not worth answering or we're not sure how to answer it, so let's not.
Brenda: Then we become the big, bad pharma company again. What are they keeping from me? Why don't I get the answer to that question?
James: But is it pharma's responsibility to service patients?
Nicole: I think we have to inform and then let them dialogue with their physician.
James: Do they want to speak to you?
Brenda: I work on 42 brands and every one of those patients wants to talk to [pharma]. Absolutely.
Lyndi: We who are all involved in this today, we are the foot soldiers trying to make that difference to be able to turn the view [of organizations] and share how the experience of working with patients allows us to have a bigger reach and be able to help people understand what they're going to go through. But when organizations, big or small, make decisions based on a letter an organization has received, then it's like we're starting all over again. We're chipping away little by little, so that people—who haven't had the experience or who are hesitant—start to gain comfort with directly talking to, supporting and educating the patient, which drives us towards patient-centricity.
Fatima: A colleague of mine recently said, “Gosh, your budget's getting pretty big.” Yes it is. So I am seeing a shift. I think the Sunshine Act may have something to do with that as well because the ability to do some of the traditional programs that were done in the past are no longer options. But with our company in particular, we've done more, so there's a greater understanding of what the patient needs and a resolve from the company to satisfy that need with respect to education.
Nicole: We're shifting in the same direction. For us it's been more about looking at past performance, how have we been successful, what really had driven the brand? And it's been supporting the patients and the patient really driving that dialogue. So that's been probably the single selling point for us in terms of getting more of a budget.
Brenda: Most of my clients are always fighting hard for these patient dollars. They're not awarded as quickly or in the same amounts as the traditional physician side of the business. Is there a shift or not? I don't know. In traditional pharma marketing, I think the money's been awarded to that physician side because you can say it generated X amount of scripts, here was the end result. You can see readily what the ROI is. Whereas on the patient side it's always a little softer. But we can show it moves the needle.
Lyndi: We were very lucky to establish in year three a budget that was about 10 times the original launch budget. In the patient world, with every program I've worked on, I've had to prove it's worth the investment. I've always been told that we really don't have to justify the physician's spend. But we have to justify every penny of the patient spend and so you're not going to get as much, but if you show you can do something with it then you'll get more. It's like earning your keep, which is fine, especially when you have the confidence to know that things can move and grow. Just recently I was brought on for a project to work across brands within an organization to help them create a patient-centric approach from a corporate perspective. “This is what we're going to do, we're going to work on this program and people are going to know what we stand for as an organization in supporting the needs for patients.” But this program has now been put on hold because the brand leadership is saying “No” to the upper leadership of the organization – they're defending where their money should go before it goes into patient support and education.
James: Will this change over time?
Nicole: I think so. It's experience that builds trust and confidence. If we were to fast-forward three to five years, the things that we'll be doing for patients will be vastly different than what we're doing today.
Nicole: It's really back to basics. You know, in terms of letting them share their experiences with others. You just help inform them. They talk to their doctor and then all you do is educate them. When you get your own way—that's when problems arise.
Brenda: I can't tell you how many pitches I've sat in over the years where I've heard “This won't work for my brand” or “This won't work in my category” or “This won't work because Italians are so different than the British.” Let me tell you one thing I know, from a patient of 20 years and doing this job for 15 years: disease—whether it's you that's the patient or your family—transcends race, money, language, culture, where you live on the planet. I can tell you that a patient with hereditary angioedema that lives in Wichita, Kansas feels exactly the same as that patient that lives in Tokyo. But people lose sight of that.