Personalized medicine has garnered a lot of attention over the past decade. Usually it means determining the factors for each person that affect their health, their diseases, and potentially their treatments. Some examples are biomarkers that are found in their blood, their genetic make-up, diet and nutrition, behaviors, and environment. One example is the Parkinson’s Foundation’s PD GENEration initiative that offers free genetic testing and counseling for people with Parkinson’s disease (PD) to determine what genes and gene variants affect the course of their disease and response to treatments.

 

But despite all the scientific advances that allow these forms of personalized medicine, one crucial aspect of personalized medicine is the voice of the patient, both in each person’s encounters with the medical system and treatment team, as well as to inform the kinds of research that should be done and how to design and perform them. Dr. Bas Bloem, a professor of movement disorder neurology at Radboud University Medical Center in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, discusses how people with PD want to be heard and how a new definition of health may best put people’s disease into the overall context of their lives.