Reawakening Curiosity about Patients in 2025: A Call-to-Action for Commercial Teams

It’s time for rare disease commercial leaders to cultivate deeper curiosity about patients. To get treatments to patients, teams must embrace the same insatiable curiosity that fuels scientific breakthroughs, shifting focus to surfacing the nuanced realities of living with a rare disease.

Patients often face fragmented care, delayed diagnoses, complex regimens and access barriers. Yet their experiences vary widely, shaped by age of onset, symptom severity, and social determinants of health. Recognizing these dynamics helps address their unique treatment, education and support needs.

In my 20+ years of experience, I’ve seen curiosity fuel commercial success. Genentech’s launch in spinal muscular atrophy and Vertex’s in cystic fibrosis are prime examples of how genuine interest in lived experience drives effective strategies. While many brands lack the resources of these companies, they can still adopt a similar curiosity-driven mindset.

The Curiosity-Driven Patient Research Mindset

Even when teams recognize patients as experts, they miss opportunities by relying too heavily on product awareness and confirmatory research. To uncover actionable insights, move beyond simply seeking feedback on your brand or preconceived tools and services.

In a time of tightening budgets, mixing existing and original research will reduce investment costs and avoid duplicating efforts. Partner with patient advocacy organizations to access available research, identify gaps and seek recommendations. Additionally, maximize resources by:

Reviewing in-house data, such as clinical trial patient experience findings

Conducting literature reviews, including behavioral science publications

Delving into patient-focused drug development meeting outputs

Using AI for social media sentiment analysis to identify trends, confusion and lexicon nuances

Once you’ve organized your findings, foster curiosity within your team. Use open-ended prompts like “Why…?” and “What if we explored…?” to uncover fresh angles for inquiry.  Next, select methodologies aligned with your goals, timeline and budget. Advisory boards, surveys, journey mapping, segmentation, advocacy collaboration, qualitative diaries and in-depth interviews all deliver value.

Patient surveys, for example, are versatile—they can track trends, uncover barriers and shape messaging and programs. They can range from large, formal studies to quick, unscheduled deployments. The latter is particularly useful when unexpected questions or issues arise. They are also increasingly used to guide payer strategies and inform the development of patient-reported outcome measures (PROMs), often required by both regulators and payers.

Designing effective surveys for rare disease populations requires thoughtful execution to avoid survey fatigue. Recruitment and representation are challenging in small, dispersed populations, making a partner with strong patient community connections essential.

A Call to Action for 2025

"Curiosity is the beginning of wisdom." – François de La Rochefoucauld

Moral philosopher François de La Rochefoucauld explored how curiosity about human nature contributes to understanding. By linking wisdom to curiosity, he reinforces the power of both when setting strategy and driving innovation.  

As we enter 2025, I challenge commercial teams to abandon assumptions and reawaken curiosity about patients as a catalyst for success.

About the Author: Keri McDonough, MA, is an accomplished leader in biopharmaceutical patient engagement, advocacy, and communications. Focused on advancing healthcare innovation by centering patient perspectives, she has collaborated with hundreds of patients, caregivers, and advocacy organizations. Before launching her consulting business, she served as Global Head of Patient-Powered Medicine and Vice President of Medical and Scientific Strategy at Syneos Health.

Keri is an active advocate for patient voice, inclusivity, and equity in healthcare. She serves on the board of the Emotional PPE Project, the LUNGevity Foundation’s Equitable Access to Clinical Trials Steering Committee and volunteers with the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard on its health literacy initiative.