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Patients are the Missing Link in R&D

April 22, 2013
An architect does not wait until construction begins to show clients a blueprint. Neither does a caterer prepare a banquet meal without consulting first with the host. In biopharmaceutical science, however, for too long we have developed medicines without engaging patients early on and throughout the process. If scientific innovation is to truly be innovative, we need to be more interested in the people our products will help. We need to rethink innovation.

The model we've used in healthcare R&D during the past several years clearly no longer works. One of the reasons is that we have lost our focus on the patient. While stakeholders have been busy boosting collaboration between bench scientists and clinical researchers, the patient experience and point of view has largely been absent from the big research picture, but putting the patient at the core of what we do is essential to advancing the innovation process.

To produce products that make a meaningful difference for patients, we need a broad understanding of patients’ needs and to ensure that their voice is heard. Unfortunately, according to Patient View’s recent international survey, pharma has a poor reputation globally with patient advocates - even declining by 20 percent in 2012. “The fundamental flaw seems to be that companies remain overly product-focused in any dealings with patient groups, and still do not truly see the world from a patient perspective,” the survey concludes.

We have a long way to go to be seen as a partner with patients in addressing their healthcare needs. In today’s R&D world, partnerships with advocacy and patient groups are necessary for improving the R&D process. Who is better to help define the gaps in treatment than those living with a particular disease or those who advocate for them? Through their insights, we will develop medicines that better fit their unmet needs

At Sanofi, we believe in an R&D vision that combines open innovation and translational medicine. Patients provide the critical link between these two approaches, and their involvement is the key to having a tremendous impact for individuals, health and medicine. So as we go beyond the pill to develop and deliver real solutions and services for patients, we recognize that it must be done in collaboration with key stakeholders, including patients and advocates, across the health ecosystem.

Here at BIO, an entire afternoon will focus on how translational medicine is helping to bridge the gaps in our scientific knowledge. Here’s one example: The discovery of PCSK9 gene variants in a French family with inherited high cholesterol and early mortality led to the discovery of variants in African American families with the opposite effects – very low cholesterol and fewer deaths from heart disease. Sanofi and others have translated such findings into groundbreaking new drug candidates that are being tested in the clinic.

As for regaining patients’ trust, we need to find – or create – opportunities to help reduce the barriers between patients and pharma.

Without this kind of connection, scientist cannot be truly innovative. To accelerate the pace of research and bring better treatment options to patients, scientists must understand their needs and ensure that their voices are heard. Here’s a start. Sanofi recently announced a new partnership with the patient network PatientsLikeMe and the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) to raise awareness about the benefits of participating in clinical trials. The partnership will utilize PatientsLikeMe’s Clinical Trial Awareness tool to match patients with relevant Sanofi trials and CISCRP’s educational materials to inform patients and their support network about the clinical research process. Through the tool, patients can search for and be notified about trials based on age, sex, disease or condition and location criteria.

Scientific innovation is clearly a cornerstone for creating better patient health. Nonetheless, innovation is too slow, too expensive and too often not focused enough on what is most important to patients. Human disease is far more complex than we used to believe, and simulating its full complexity in a tube or on a chip is still beyond our reach. Healthcare today is so complex that no one organization – be it industry, government, care organizations or providers – can make a huge impact alone. Only working together will we solve the most complex patient issues, and only by including those patients and their advocates in the R&D process will we be truly successful.

Elias Zerhouni is President of Global R&D with Sanofi.