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Yelak Biru: Beyond Clinical Trials – The Untapped Goldmine of Patient Experience

Yelak Biru/X

Mar 30, 2025, 09:44

Yelak Biru: Beyond Clinical Trials – The Untapped Goldmine of Patient Experience

Yelak Biru, President and Chief Executive Officer at International Myeloma Foundation, shared a post on X:

“Beyond Clinical Trials: The Untapped Goldmine of Patient Experience

A myeloma patient once told me,

‘The hardest part of my treatment isn’t the side effects – it’s the uncertainty between doctor visits.”

This statement has stuck with me because it highlights something clinical trials often miss: the lived experience of patients beyond the hospital walls.

Clinical trials are the backbone of drug development, providing critical efficacy and safety data. But they only tell part of the story.

The reality is that:

– If only a small percentage of patients participate in trials (5%), what happens to the voices of the other 95%?

– If trials happen in controlled settings, how can trial data reflect real patients where life is unpredictable?

– If data capture stops at endpoints, what happens after a trial ends – how do we capture the ongoing experiences of patients as they continue living with their disease?

Patient communities – through advocacy groups, online forums, and real-world interactions – hold a wealth of insights that can transform drug development.

They can tell us:

How do side effects impact daily life in ways clinical reports don’t capture?
Why do some patients delay or stop treatment despite available options?
What truly matters for patients when balancing efficacy, quality of life, and accessibility?

How can we make co-creation the norm, not the exception? If Pharma truly wants to create treatments that serve patients, we need to move beyond consulting to co-creating with them.

This means:

– Involving patient voices from the earliest stages of R&D – not just at regulatory checkpoints.

– Designing trials with patients that reflect real-world patient diversity and experiences.

– Partnering with advocacy organizations to collect and apply real-world patient insights meaningfully.

For patients and advocacy groups, this means actively shaping the conversation – demanding a seat at the table where decisions are made. For Pharma, this is an opportunity to create better, more impactful treatments that align with patient realities.”