MPN Pathways: Empowered Voices in Research bonus session — What's your why?
At MPN Research Foundation, we are dedicated to ensuring that the patient’s voice is at the forefront of our work. As we grow in our role as a patient-centered research foundation, we continue to take intentional steps to bridge the intersection of patients, research, and pharmaceutical companies in service of better outcomes for those affected by myeloproliferative neoplasms (MPNs).
From the beginning, the input and perspective of a highly committed and sophisticated physician-scientist community have driven our agenda — deepening our understanding of MPNs and accelerating bold, innovative research. The collaboration between the biopharmaceutical industry and MPN Research Foundation began cautiously and deliberately — but only after a known target, the JAK2 mutation, was identified, opening new doors for therapeutic development. Advancing novel research and, ultimately, finding cures for MPN patients, requires the full engagement of every stakeholder.
For a long time, however, the prevailing sentiment across patient advocacy organizations was one of skepticism — rooted in a desire to protect patients from undue influence and a wariness of partnerships with those who stand to profit. This tension was real, and the concern about promoting chronic treatments over long-term cures was palpable. To this day, lingering questions remain: What roles, agenda, and motives drive the commercial biopharmaceutical industry to engage with a patient-centered research foundation?
Understanding the “why?” behind biopharmaceutical companies’ roles is essential for us to continue accelerating our progress in the MPN landscape.
The reality is, if we are committed to finding cures for MPNs, it is the commercial biopharmaceutical companies that take academic discoveries to the next level. They invest in clinical trials, gather the evidence required to navigate the complex global regulatory pathways, and ultimately, convince payors to cover these critical, life changing treatments that less than 15 years ago, were still a wish for MPN patients. This demonstrates the biopharmaceutical industry’s dedication to patient care. While profit may be part of the equation, many of these organizations — and the people within them —are deeply motivated by a genuine desire to help patients and drive meaningful change.
In a world where we strive to lead with empathy, we must also recognize that empathy is a two-way street. Even within profit-driven organizations, there are individuals working tirelessly to bring new treatments to patients. Many have been personally affected by cancer—experiences that led them to careers in life sciences. By understanding who they are and what motivates them, we can build more empathetic, collaborative relationships — and ultimately, reach our shared goal: improved outcomes for those living with MPNs.
In the MPN community, we are incredibly fortunate to have over 20 companies actively advancing treatments for myeloid cancer. Their investment of time, funding, and intellectual capital reflects the promise of delivering more therapeutic options to those living with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF)— creating meaningful, lasting impact. This is a direct result of the invaluable role that our community plays in the development of these treatments. These efforts, made possible through ongoing partnerships and community engagement, are accelerating our shared mission to move from hope to cures.
As the leading convener of the community, it is important for us to acknowledge the passion, skills, and good intentions of the companies we collaborate — especially as they bring new, promising treatments to the clinic, ultimately enhancing the lives of MPN patients.
On March 4, 2025, we tore down a few more silos by bringing our MPN Pathways participants together with a handful of dedicated patient advocates working within biopharmaceutical companies. The conversation, titled “What’s Your Why?”, offered a meaningful platform for these industry leaders to share their motivations and personal stories behind choosing a career focused on improving patients’ lives.
MPN Research Foundation brought together a panel of patient advocates from five of our most engaged partners: Incyte, Karyopharm, Bristol Myers Squibb, Sobi, and MorphoSys. The conversation was thoughtfully moderated by Ned Wienshienker, a passionate member of our Patient Impact Council, and centered on a single, powerful question posed to each participant: “What’s your why?”
Personal Motivations and Advocacy Journeys
Each panelist — representing companies that develop or produce MPN-targeted therapies— shared deeply personal stories about what led them to careers in oncology patient advocacy.
“My journey into oncology began when a close family member was diagnosed with cancer,” one panelist shared. “It was a life-changing experience that made me realize the importance of patient advocacy.”
“I used to work in a different industry, but I found my true calling in patient advocacy. It’s incredibly rewarding to know that my work directly impacts patients’ lives.” added another panelist.
Other speakers described transitions from other roles within the pharmaceutical industry, realizing their true impact was in amplifying the patient voice.
Their stories were a powerful reminder that passion and purpose often sit at the heart of industry work. Across the board, panelists expressed a shared, resounding commitment to ensuring that patient experiences influence every stage of drug development and decision-making.
“Hearing patients’ stories and knowing that our efforts are making a difference is what keeps me motivated every day,” said another leader.
These are not just professionals working in healthcare — they are patient advocates who bring empathy and purpose into their daily work.
Champions for the patient voice
MPN Research Foundation continues to uncover the biopharmaceutical companies’ unwavering and growing commitment to transparency and patient involvement in drug development. These leaders ensure their organizations involve patients and caregivers in designing and reviewing clinical trial protocols and consent documents — recognizing that their voices are critical to the success of any development program.
These efforts are not symbolic — they’re strategic. Our panelists acknowledged that patient input adds clarity to trial design, improves relevance, and helps companies identify and address real-world barriers. Just as we emphasize how including the patient voice early in drug development leads to more meaningful treatments, these leaders highlight how that same approach can also support a drug’s commercial success.
As professional patient advocates, these leaders continually innovate how they incorporate the patient voice into their work — especially through the design and use of patient and caregiver advisory boards, which enable rapid access to diverse perspectives. They also utilize patient insights to shape everything from early-phase research to educational materials and recruitment campaigns. These efforts have led to meaningful improvements in clinical trial accessibility, including the use of plain-language documents, local testing options, and transportation support.
Still, challenges persist. Regulatory restrictions often limit how directly companies can engage with trial participants, making it difficult — and sometimes costly — to act on all elements of patient feedback in a timely manner.
“It’s challenging to implement all the feedback we receive due to regulatory restrictions and costs,” one panelist noted, “but we are committed to making clinical trials more accessible.”
Restrictions on blinded clinical trials, where participants are not aware of certain aspects of the study, can also pose challenges. “One of the biggest challenges we face is the restriction on direct communication with patients in blinded trials. It limits our ability to gather comprehensive feedback,” said an advocate. The heterogeneous nature of MPNs also makes it difficult to capture every aspect of patient experiences.
Panelists were candid about internal tensions too, acknowledging that sometimes incentives within companies don’t align perfectly with patient priorities. Still, most emphasized that advancing promising treatments remains the central focus.
For many of these panelists, whose titles include “patient advocacy,” this work is personal and professional. They push forward inside their organizations — building faster pathways to gather feedback and finding creative ways to elevate patient voices.
“We’ve found that free-form feedback often provides unexpected insights that structured surveys might miss,” one shared.
Gathering patient insights early can be especially challenging for smaller companies, but partnering with organizations like MPN Research Foundation offers an efficient, trusted way to engage the community without requiring major infrastructure. These leaders recognize that ensuring MPN patient needs are heard — both within drug development and across the broader oncology community — is a responsibility they take to heart.
Advice for patient research advocates
Our industry partners share our passion for building a strong, informed community of patient research advocates — one that programs like MPN Pathways Empowered Voices in Research are helping to grow. When patients and caregivers bring their lived experience into research and drug development, everyone benefits. Their insights strengthen the relevance, accessibility, and success of new treatments.
Panelists emphasized that no one should feel intimidated about stepping into this space.
“Don’t be afraid to get involved, even if you lack experience. There is plenty of support available, and your voice matters,” encouraged one advocate.
Offering honest, constructive feedback when reviewing study materials or clinical trial designs is essential to improving success and advancing promising treatments.
“The more you learn and stay engaged, the more impactful you can be as an advocate to help us and other patients,” another participant advised.
We all have a role to play in breaking down silos and working toward the same goal: better treatments — and ultimately, cures — for MPNs.
To achieve our shared goals and ultimately drive cures for MPNs, we must continue working together — recognizing the human element behind every stakeholder, from patients and caregivers to researchers, advocacy organizations, and the dedicated patient advocates working within the biopharmaceutical industry. We stand by our commitment to serve as a bridge across these communities, fostering connection, empathy, and shared purpose to build a more informed and empowered network of research advocates — one that helps accelerate progress and brings meaningful treatments to all lives effected by MPNs.
