Kapila Viges

CEO, MPN Research Foundation

New patient-centred initiatives are helping clinicians speak the same language as patients, aligning treatments with lived experiences and empowering patients on their path to better outcomes.

As a physician, you know that the best care begins with understanding your patients — not just their symptoms but their unique experiences and concerns. When caring for those with myeloproliferative neoplasms (MPNs), a group of rare blood cancers, you may face the added challenge of navigating their complex journey.

The patient’s voice in research

Understanding your MPN patients means knowing what matters to them. Research is now reflecting those priorities. MPN Research Foundation’s Patient Impact Council brings patient voices into the scientific process.

This initiative incorporates patients into the review of scientific grants and clinical trial protocols. This increases the transparency of science and ensures progress and research topics are aligned with what matters most to patients.

Why this matters to physicians:

• Clinical trials address enrolment barriers to accommodate patients’ daily struggles.
• Research outcomes align with patient priorities, from halting disease progression to quality of life.
• Patient-informed designs foster clinical trial participation and trust.

Understanding your MPN
patients means knowing
what matters to them.

Making patients stronger partners in care

When patients understand their disease and treatment options, physician-patient discussions become fluent. Through educational webinars, patients gain tools to become active participants in their care and the medical community.

Our webinars include a variety of educational topics: understanding clinical trials and informed consent; the scientific impact of diversity in clinical trials; and drug development, from bench to bedside. For clinicians, this means connecting with patients who are prepared to engage in medical discord, helping you tailor treatments to their needs and goals.

Insights from patients and caregivers

Clear communication is the foundation of effective care for patients with MPNs. Yet, data from our recent global survey of MPN patients reveal key areas where communication can improve outcomes. We believe access to these insights can help physicians guide patients through complex decisions, from exploring clinical trial enrolment to navigating treatment options.