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With more than 15 years of experience launching in the rare disease space, Stephanie Collins and Courtney M. Rutkowski founded BioLaunch Solutions in 2023 to help biopharma companies achieve their commercialization goals at scale, including field force optimization, leadership development, post-merger integration, and patient engagement. In celebration of National Patient Advocacy Day (recognized annually on August 19th), we spoke with Stephanie and Courtney about bridging the gap between organizations and patients, the paradigm shift underway in biopharma, and how patient advocacy, patient-centricity, and the patient experience should intersect to drive better outcomes. Check out our conversation below and be sure to follow BioLaunch Solutions on LinkedIn!
Regardless of your exact role, we’re all part of the patient experience and the broader healthcare ecosystem. Whether you’re on the commercial team trying to get your product to market, or a healthcare provider who believes in a product but struggles to get it to patients, any gaps in or frustrations around patient engagement are felt by all.
The majority of biotech and biopharma organizations start off with the intentions to be patient-focused and provide a positive patient experience, but once you get into the thick of it, it can be hard not to create silos. As a company grows or gets closer to bringing a commercial product to market, some of that mission gets lost in translation. We founded BioLaunch Solutions to bridge this divide between clinical development and full commercialization. We help remove some of these operational and organizational barriers, particularly where patients and caregivers are involved, so a company’s real mission can be lived. In doing this, we take a very human-centered approach.
If you are in the life sciences, you chose to find meaning and purpose in your work; but oftentimes, that gets lost in the day-to-day work. When you're inside an organization, and especially if you’re sprinting towards a launch, it’s easy to get so focused on your role that you miss the bigger picture. Most organizations don’t have a full-fledged patient engagement strategy from early clinical development through post commercialization that includes having a plan for communicating both good news and setbacks. When you look at it through a strategic lens, early engagement with a patient community and advocacy groups is critical to determine what the patient journey should look like within the lifecycle of the therapy. Patient groups need to know the good and the bad, and companies should be engaging with them early and often.
It sounds straightforward, but not every organization has the resources or makes the necessary investments to engage with patient groups early to understand their unique needs and create a tailored, truly patient-centric program. There’s still significant opportunity to create and refine frameworks to help patients and organizations achieve their mutual goals.
Unless you walk a day in the life of a patient or caregiver, you really don't know what’s going to work best. If you want to be patient-centric, you need to understand the unique patient needs and challenges before you even get to the market access piece and try to figure out what distribution’s going to look like.
Often companies don’t have a person dedicated to patient engagement that spans across all work streams company-wide. This where our fractional work comes in to help be the conduit to the those patient advocacy groups — particularly in the rare and ultra-rare disease space where patient groups are much smaller and the efforts are often grassroots. There is tremendous opportunity for organizations to have a human connection to these groups that benefits patients, first and foremost, but also the organization, the life science company or biotech that’s developed an innovative product.
To put it simply, patient advocacy is taking the collective voices of patients, families and caregivers and amplifying it. It’s policy, it’s legislation, it’s going to the FDA early preclinical to say ‘these are the things that we experience as a group.’ It’s capturing and sharing all the stakeholder voices, whether that’s communicating the natural history of the disease or other unique challenges or experiences. Patient-centricity then, as we define it, is all the things that an organization does developmentally to focus on the patient. How is the system working? What are the things that you're putting in place? How are you educating and marketing? Finally, the patient experience is how a patient/caregiver moves through the entire ecosystem. At the end of that outcome, what was their experience? How is the organization supporting the patient, the caregiver, and the physician end-to-end? Whether it’s communicating information or making sure the right resources are available to support a positive outcome after starting therapy, all of these pieces factor into the patient experience.
There’s been a shift towards biopharma companies working alongside patient advocacy communities to dig in and understand their needs. The CURES Act resulted in more patient advocacy groups engaging their representatives at the state and national level. Before that, it was primarily companies positioning themselves as the experts.
We, as life science companies, need to get out of the habit of saying we know what's best for patients, families, and caregivers. They need to have a seat at the table.
At the same time, patients have become more educated and involved in their care journey. In the case of a rare or ultra-rare disease, these individuals and loved ones have gone through dozens of physicians or healthcare providers to get to a diagnosis. They're usually exhausted, frustrated, and typically they've spent an enormous amount of time doing research. Finally the paradigm is starting to shift towards more collaboration.
Although it’s been slower than we’d all like, we’re seeing patients becoming more involved, as well as a handful of forward-thinking organizations engaging communities early and often. Especially when it comes to patient advocacy, we’re starting to see more collaboration from research and development through pre-launching planning and post-commercialization. Traditionally with research and development, you would not discuss your research with people outside of your group to protect intellectual property, but we’re starting to see a shift in understanding: to fill the needs of the patients and the communities, we all need to be working together. It’s possible for everyone to get what’s needed but also to deliver on what’s most important, which is new and innovative treatment options.
Especially when you’re working with ultra-rare diseases, you need to have a window into how these patients are being supported throughout the process. That starts really early on with talking to patients about what this journey needs to look like to ensure their success. Now we’re at a point where the broader industry needs to catch up to meet patients and caregivers where they are today.
To drive change, you need to know the ‘why’ and ‘how.’ Once you recognize that there is an organizational gap, it’s making sure you know why it’s important, and then begin to iterate on how to fix it.
At the end of the day, there's a patient, a caregiver, a family on the other end of the activity or decision. It’s important for all of us — for all of humanity — to do a better job in how we communicate and engage with all patients. That’s the why.
For the how, change management within any organization is difficult. Within healthcare and life sciences, it’s important to appreciate how we got to this point because if you can't understand the history, then it's difficult to understand why it’s challenging to change. When you look back at our industry and how it’s been built, we've siloed ourselves. We’re a highly regulated industry — maybe the most regulated industry out there — and for good reason when human lives are at stake. But we’ve taken that and made it more complicated by further siloing ourselves. Breaking down these silos of visibility and coordination is one of the key gaps we fill when we come in.
Whether we’re working together or not, it comes back to focusing on the human lives/experiences at stake, coming to the table with an open mind, and working together towards innovative solutions. Just because you’ve launched 20 products or were at a specific organization doesn’t mean it has to or should be the same way again.
Our industry changes every day. It's continuously evolving. The changes that we're going to see in the next five years are leaps and bounds above what we've seen in the last five to seven years. Keep asking the tough questions, keep bringing new ideas, and keep finding ways to do things better and more efficiently.
If you are going to be a truly patient-centered organization, start with engaging the community you're trying to serve at the earliest possible time to really understand what their experience has been with the disease. By focusing on the why, your organization will be prepared for growth and commercialization.
Stephanie Collins and Courtney M. Rutkowski are Co-Founder and Managing Partners at BioLaunch Solutions. Learn more here.
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