The voice of the patient
 

Today's news, "Health centers increasingly seek patient feedback to improve care" (see http://www.post-gazette.com/pg/07143/788091-114.stm) reinforces the growing awareness and validity of our message:

"The missing ingredient in the development of new therapies is the voice of the patient"

I have been quoted a number of times making this statement, and whenever I am in an audience of health care professionals, I am very often one of a very few if not the only patient in the room. I will generally make a statement to draw attention to this simple fact. People often nod their heads in agreement and some will acknowledge the power of the statement, but over the past half a dozen years that I have been making such statements, I still find precious few examples where someone or an organization has actually sought out input from patients. This is particularly true for PD and neurology in general where only in this century has there been widespread acknowledgement that "non-motor symptoms" are important components of the debilitating effects of PD, and repeated failures of clinical trials aimed at altering progression have been suggested to be shortcomings in animal models to predict human reactions to medicines. This includes placebo effects and other changes in human response to the process of being a participant in a study. Self awareness of humans just makes us different from animals, particularly for brain diseases.

Changes in the past resistance to greater collaboration among scientists, doctors, industry and regulators are now emerging that give us hope that the migration to a truly patient centered health care is gaining momentum. The Pipeline project actively promotes this paradigm shift to patient centered research and care. We have found that self help and advocacy for ones own health as well as for the larger goals of helping to facilitate and change the research enterprise and delivery of new therapies are not only good for our common cause, but also good for the hope and spirit of the individual.

Among the positive signs of increased PWP influence are examples:


-FDA has appointed PD consultants to advise on all phases of clinical evaluation of new therapies

-Medical centers and manufacturers seek patient input to their health care and research programs

-Patient organizations,such as PDF, actively seek grass roots input and advice

There are many roles to play. We need the help of knowledgable PWP. Most tasks can be done at home on your own time table. Check the pipeline website for more information:

http://www.pdpipeline.org/aboutus/helpwanted.htm

Perry