Insights
Bringing the patient perspective into research from the start

Research team in discussion with patient advocates reviewing clinical study materials

Bristol Myers Squibb has long worked to understand and reflect the patient perspective across drug discovery and clinical development. Today, that focus is expanding earlier in the research process — ensuring patient and advocacy insights inform decisions when they can have the greatest impact.

As Shilpa Venkatachalam, Global Healthy Living Foundation, notes “There is growing recognition that patient input is essential. Meaningful collaboration means being involved from the very beginning, not just as a checkbox exercise.”

Many of the most important choices in research and development happen well before a clinical trial begins. These early decisions can shape who participates, how studies are designed and whether research reflects what matters most to patients and care partners.

Engaging patient advocacy groups, patients and care partners is a structured and intentional part of how work is done at Bristol Myers Squibb. Clear approaches help define when engagement occurs and how insights are applied throughout development — supporting more informed, practical and patient-relevant research.
 

Why early engagement matters


Patient advocacy groups offer perspectives shaped by the communities they represent. Patients and care partners share lived experiences that highlight the daily impact of disease and unmet needs that may not be visible in early planning. Together, these insights help inform development decisions.

In Alzheimer’s disease research, for example, Bristol Myers Squibb worked with advocacy groups and care partners to review draft trial designs. Feedback focused on factors such as the number of required assessments, the practical demands of participation and whether study endpoints reflected what matters most in daily life. These insights helped shape protocol planning — making participation more feasible and ensuring research better reflects patient and care partner priorities.

By incorporating these perspectives earlier, teams can anticipate challenges, reduce barriers to participation and focus research on outcomes that matter most to patients and care partners.
 

From practice to shared learning


Over the past year, Bristol Myers Squibb brought together internal teams and patient advocacy leaders to share experiences and strengthen approaches to early engagement across research and development.

Several practical lessons emerged:

  • Engagement is most effective before key research decisions are finalized
  • Insights should shape decisions — not simply confirm them
  • Early collaboration can improve the relevance and feasibility of research
  • Communities should understand how their input influenced outcomes

These lessons contributed to a set of guiding principles for early engagement — translating shared experience into approaches that can be applied across research and development.

As Courtney Bugler of ZERO Prostate Cancer explains, “We’re at a moment where the language of patient engagement is everywhere, but the practice is still catching up. My hope is that these guiding principles help close that gap by providing organizations with concrete action items. The principles aren't aspirational; they're grounded in what we know works.”

These principles are explored in greater detail in a white paper published by the Drug Information Association (DIA), a globally recognized organization that supports knowledge-sharing and best practice across healthcare and drug development. Developed collaboratively by ww5 and patient advocacy leaders, the paper provides practical guidance for embedding meaningful patient engagement earlier in the drug development process.

Read the full paper on the DIA website here.

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    About Bristol Myers Squibb

    Bristol Myers Squibb is a global biopharmaceutical company whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases. As global citizens, we work sustainably and responsibly to create a positive impact in the communities where we live and work.