PM360 Trailblazer Brand Champion Award winners and one Marketer of the Year finalist joined us to discuss, “Putting the Patient First: How Can the Pharma + Patient Equation Lead to Better Outcomes?” Common Sense columnist Bud Bilanich moderated the discussion on meeting the needs of patients. The Trailblazer Brand Champion Roundtable was sponsored by OPUS Health, a division of Cegedim Relationship Management.
Bud Bilanich: When people talk about putting the patient first, what are the kinds of things they’re talking about? How is it different from maybe more traditional pharma marketing?
Tina Fehr: In our area—skin care, dermatology, women’s health—the most important thing has been getting feedback from the consumer, the patient. What is working for them, what is not. We read articles that talk about compliance and people falling off for different reasons, but I think the biggest thing is listening to them and then being able to engage in that conversation
So many of today’s patients (consumers) are online, they are going mobile, digital, social—and they want to talk and share. We started out in the digital space slowly, testing and learning and are now engaged with nearly 20,000 people on Facebook, and it’s growing daily. Our online web community also continues to grow. But, it’s not all about the brand. It’s about the patient and what is working for them. What are they connecting with? How does our brand fit into their routine? What means something to them and the dry skin condition that they’re dealing with?
Bud Bilanich: As you were talking about trying to engage, I’m curious about gathering data. How were you doing that? Was it focus groups, surveys?
Tina Fehr: We had a field force that called on dermatologists, so we talked to healthcare professionals, but we also talked directly to patients through focus groups. We conducted traditional and in-home focus groups in key markets across the country and learned about patient routines.
Sandrine Kram: We started with the idea of supporting people’s understanding of the disease—what patients and their families go through, how they overcome the disease, supporting early diagnosis, for example, in Parkinson’s disease, or to help overcome the stigma that is associated with the disease, for example, in epilepsy. We also uncovered that there was a need for patients to talk to other patients or caregivers to talk to other caregivers in severe chronic diseases.
We identified a number of people across Europe and the U.S. who had the disease or who were caregivers and who wanted to raise public awareness about the disease and reach out to other people living with the same disease with one goal in mind: They shared their stories, how they describe their disease and how it affects them, what their life is on an everyday basis, what their issues are, what are their tips to overcome difficult situations, how is the relationship with their HCPs—and this got a lot of success.
We also shared these stories with our employees to raise their awareness about these people and their family’s experience and the importance of bringing new solutions for people living with severe chronic diseases.
Marc Migliorini: I want to pause for a moment on Tina and Sandrine’s comments. I heard them both refer to patients rather than individuals with a particular disease. I think we need to get to know them as human beings’ since most people don’t think of themselves as patients.
Bud Bilanich: Tina and Sandrine are basically saying that. And it really is only common sense, yet somehow we seem to have to relearn it in this industry—these are people, not necessarily patients.
Brian Johnson: That’s something that we recently realized as a company at CSL, even though in our top five company objectives we put focus on the patient right there. But we came to the realization that the vast majority of our employees have never met a patient. So what we’ve started to do is invite patients to large company functions. It’s important for us as companies to make sure that everybody has access to these patients too and understands what they’re going through.
Angel Fernández: I’m jumping in there. Even though the Puerto Rico market has its own characteristics compared with the U.S., patient assistance programs should be personalized, custom-made to the patients and not a 1-800 number—at least the experience that we have is face-to-face contact.
Marc Migliorini: I completely agree with a personalized medicine approach. A patient’s decision to remain on therapy is part behavior and part perceived value. So, we as a community can create that value proposition either through a patient assistance program or a loyalty program. We should create a personalized support program. If the patient feels that it’s all about them, you’re going to have a more engaged patient in managing their health.
David Friedman: Under the leadership of Lou Ferrari, Savient adopted a similar type of process. We have frequent patients, or guests as we call them. We try to personalize the person, attend town hall meetings with the organization so that we learn what it’s like for them to live with refractory chronic gout. It gives us a perspective on their lives and the condition and how we might be able to better address not only their personal needs, but the needs of others in the community.
Ena Singh: Historically in our world we’ve had the mentality that we know best. We have continued to develop me-too drugs. We have shown data after data, most of which means nothing to patients. We can show them ad nauseum Phase III trials. They really don’t care. What they want is simplicity. They want to know they are being taken care of as individuals. And I think we’re getting there. I think that we understand that better now.
One of the coolest exercises I ever did in my life as a marketer was, while working on an ulcerative colitis drug, we gave the entire team—not just the brand team, but the extended team— manufacturing, regulatory, legal—a buzzer. For three days, you had to wear that buzzer and every time it went off, you needed to make it to the bathroom in the next 60 seconds. If you couldn’t get to a bathroom, if you were in a meeting, in a car, or in a plane, you couldn’t take it off. In the middle of the night, you had to go change clothes.
And believe me, I knew every bathroom in my building by day two. I knew every bathroom on my drive from work to home and back again. In my head, it was a game, but it wasn’t really a game. To some people that’s the reality of their lives every day. They live with that; the shame of not being able to make it to the bathroom makes it a very, very isolating disease. It makes it a disease where people don’t want to talk about it. It’s the same for overactive bladder, and depression. It’s very hard to get into somebody’s head and be able to walk in their shoes.
Bud Bilanich: Well, thank you Ena and I think that the word I wrote down in very big letters on my pad here is empathy. When you were telling your story about the buzzer, it’s trying to live what that patient lives.
Sandrine Kram: One of the new things we’re trying—that we’re finding very interesting—is bringing together groups of healthcare professionals and patients with a certain disease. We identify with them and what their respective unmet needs are, what’s the priority when a new patient is diagnosed and as the disease progresses, etc., and get, through interactive voting, the perspective of the two groups next to each other. You can immediately confront the opinions from the two groups—that is very enriching. There is a difference in their expectations from treatment, for example, and having their respective outcomes built into clinical research is important to identify and bring better solutions to help people living with these diseases. Until now, traditionally this was done much later when drugs are approved already.
Bud Bilanich: Thank you Sandrine. And I think that that gets to this notion of moving away from the “We know best. We’re doctors or we’re big pharma. We know best.”
Lina Nudera: We’ve recognized through all the research we’ve done for the conditions we’re treating, that it really is driven by the patients in terms of their treatments for something that’s very symptomatic—and physicians aren’t necessarily going to recognize the problem unless the patients speak up. So, we’ve made a very concerted shift towards the consumer. Takeda is always focusing on how we prioritize our brand strategies, and how we prioritize our marketing efforts as well as budget, but really recognizing that the patient is driving their care.
I think a lot of our opportunity is in learning to listen better and understand more of what it’s like as a patient—and that includes everything from living with the condition, to accessing treatment, to just managing day-to-day activities.
Melissa Bojorquez: Well, I do a lot of training for our internal people in social media and one thing I explain is that the more emotionally involved someone is with something, the more active they are on social media. When you talk about orphan diseases—what we found is it’s an instance of where if you build it, they will come. In other instances, there’s preset online communities, so what you want to do is partner with what’s already existing. I think there’s a little bit of an art to how you partner with these groups, rather than build it, as pharma tends to assume. We don’t need to. We need to understand what’s already there.
Bud Bilanich: You know, you said two things I thought were really cool. We need to speak each other’s language and the more you can speak people’s language—it’s almost like key word research. If you’re constantly mentioning words that are familiar to people, they’re more likely to pick up on what you’re saying as they scan a page.
And the second thing that really got me was you said you were bringing in people from the communities that probably were people who had the disease and were passionate about the message.
Melissa Bojorquez: One of the big mind shifts is that although the physician is still very influential, so is the patient, their caregivers and their families.
Physicians are very well aware of the influence of the family members, the friends and their social network. The more that we help them solve health issues and stop focusing on selling a single pill or a single whatever, the more valuable the partner we are. Our medications are a part of the solution for some people, but we need to recognize it in more of a holistic fashion.
Paul Kandle: Thank you so much for offering practical solutions. It really gets back to health literacy. A patient may not have a list of questions while in front of their physician. They may not understand the reason why he/she is going to prescribe this therapy. This probably leads to an unsatisfactory patient experience. They walk out of the physician’s office with a scrip with no intention of filling it. One potential solution is to leverage the web via “digital health communities,” as patients seek information, it’s an excellent opportunity to provide multi-faceted support and tools. I know some of you in the room are already leveraging this space, which is very encouraging.
Ena Singh: And I think the bigger challenge on patient communication is not just in the U.S., but also outside the U.S. If you think about trying to talk to a patient in Malaysia versus trying to talk to a patient in Singapore, the lexicon is very different. How you reach them is very different.
Brian Johnson: All of our diseases are orphan, so we, by nature, have to be very patient focused and one of the unique ways we do that is through a hub model to give patients access to our therapies. So with our therapies, it’s not as simple as just filling out a scrip, going to your CVS and picking it up.
All of our products are delivered via specialty pharmacies, which is a very complex situation in getting payment, getting approval on all these different sides. Sometimes it takes 10 days to get started on a product. Sometimes it takes two months.
So what we’ve done is stepped in to be the intermediary between the patient and the physician and the insurance company and the specialty pharmacy and anyone else who needs to be involved to see that on boarding process. Now, part of that is something that I think is very unique for us and that’s where we use patient advocates to be the voice on the phone—so it’s not just a care coordinator who’s in an office answering the phone.
You are put in touch with an actual patient with these diseases and the role of our patient advocates is not to sell the product or have them use more of the product. It’s just to provide a connection with someone else with this disease. Some of these people have never met somebody with their disease until they had this phone call with somebody.
So, you know, it’s great to ease the transition for the patient. They can share experiences and we see that a lot of strong relationships are formed here, and as a side benefit, that strong relationship is transferred to CSL Behring. This is a patient retention tool as well as a tool to ease patients’ transition onto the products. So that’s something that we found is useful for us.
Bud Bilanich: David has similar kinds of patients as Brian, so I’d be interested in your feelings about what Brian just had to say.
David Friedman: We’re in a very similar situation where we are also looking at a similar type of program as you just mentioned. However, as I listen to some of the stories, I guess as an overlay, we’re in a unique situation. Not only do we have one drug—it’s orphan—but we’re a young company. We’re looking to implement many of the initiatives that we’re all discussing here regarding patient centricity.
You know, I think it’s a very simple question, but it’s so complex and has so many layers, when I look at it through the perspective of our company and who our patients are. Where does the messaging start, where does the focus start, because for us, there is a very low sense of understanding of the disease, so disease-state awareness is paramount for us. We try to best understand that, as I mentioned, through a guest program where the patients come to us. We have also invested significantly in public service announcements, PSAs.
PSA stories from patients—“I’m in a wheelchair. I’ve been in a wheelchair for years and after being on this drug for just mere months, I’m now playing tennis.” I mean, that’s a life-changing situation. And we all want to tell these stories, so we’re using those types of channels to communicate not only the disease-state awareness, but also the success.
Bud Bilanich: Human beings connect through stories. They can be very powerful. Angel, do you want to talk a little bit more about BMS and how your company views patient centricity?
Angel Fernández: Sure. The way that I see it, how we put the patient first is to put ourselves in the patient’s shoes. The market is changing consistently. We need to do the things in a different way. We need to think outside of the box and bring innovative solutions to the table. Currently, patients are asking for more. They’re not only requesting educational or financial support. They’re requesting someone to explain in basic terms what they need to expect about their conditions and someone to help them to walk through the whole process.