Oxford PharmaGenesis recently attended the 6th European World Orphan Drug Congress (WODC) in Geneva, where we observed patient-centricity in action. ‘Patient-centricity’ is a term that is used increasingly to describe organizations’ willingness to put patients at the heart of the treatment development process.
A wide range of topics was discussed at the congress: how to expedite the development of new therapies, how to repurpose existing treatments, and how to improve the approval and reimbursement processes to make orphan drugs more accessible to patients. Improving patients’ quality of life as soon as possible was the core thread that bound all of these discussions together.
Patients and patient advocates were high profile at the meeting, comprising nearly half of the keynote speakers and almost one-third of the audience. Dr Ana Mingorance, Scientific Director of the Dravet Syndrome Foundation, and Debra Miller, CEO of CureDuchenne, showcased the important role that patient organizations can play in setting research priorities, optimizing trial design and facilitating recruitment, as well as providing vital funds to kick-start orphan drug development for biopharmaceutical companies. Alastair Kent, Director of Genetic Alliance UK, concisely summarized this by sharing the three ‘Rs’ that patients groups can contribute: recruitment, realism and results.
“It was a pleasure to see rare disease patient groups take such an active role at this meeting,” said Dr Lizzie Perdeaux, Medical Writer. “Rare disease advocates do fantastic work to support their patients and to generate truly innovative ideas, such as using social impact bonds to fund drug repurposing projects.”
At Oxford PharmaGenesis, we believe that one of our key goals is to improve patient health (as captured in our Conceptual Framework). We are therefore delighted to have participated in a truly patient-centric conference and are already looking forward to attending WODC Europe 2016.
