Changing the Meaning of Patient-Centric Approaches to Innovation

Changing the Meaning of Patient-Centric Approaches to Innovation

06.25.12 | By

There has been a steady stream of media coverage out of last week's BIO meeting in Boston, Mass., highlighting the evolving biopharmaceutical research and development (R&D) model, particularly as more and more patients are helping to drive the direction of such research. While patients have always been front and center when it comes to companies' R&D decision-making, never before have we seen them play such an active role in helping bring many medicines from the lab to the market.

Like BIO, PhRMA represents many leading biopharmaceutical research companies that are changing their business models and partnering with others to help meet the growing demand for personalized medicines for complex diseases such as Parkinson's, rare cancers and even hemophilia. In the case of hemophilia, The Boston Globe reported last week that parents of a child with this disease are among many other parents who are literally transforming the meaning of patient-centric approaches to drug development by becoming active participants - even fundraisers - throughout the long and arduous R&D process.

As a mother, I couldn't imagine what it would be like to have a child suffering from a disease and be faced with the fact that no therapeutic options exist to help treat her illness. For most, if not all, parents, giving up is simply not an option. So when I read about patients and their families taking an increasingly larger role in drug development, and all of the necessary groundwork that it takes to help move the science forward, I not only applaud their efforts, I also find myself in awe of their inspirational work to help their loved ones survive.

Joe O'Donnell, a father of a son who passed away from cystic fibrosis, is just one parent among many who continues to inspire others by helping to pave the path forward in finding treatments for life-threatening and debilitating illnesses. His partnership with the Cystic Fibrosis Foundation and a Cambridge-based biopharmaceutical company led to the discovery of a breakthrough treatment that is now available for patients with this disease.

Joe's courage and commitment to helping raise funds for such an important cause is beyond noteworthy; it is the perfect example of what can be accomplished with extraordinary willpower and to be frank, the guts to move the ball to the finish line in the war against disease.

Finally, it is important to also applaud The Boston Globe for doing such a tremendous job highlighting stories such as these - they provide incredible insight into how the evolving R&D model continues to transform the medical innovation landscape and provide hope to patients who need it most.

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