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.