Online Patient Advocates Critical to Consumer Health

Fascinating panel discussion of leading patient advocates – Ann Bartlett, Dave deBronkart and Alicia Staley – moderated by Jeremy Shane at the ePharma Summit. My only complaint is that it was limited to half an hour. I was particularly struck by the unanimity on the panel that they welcome open interaction with pharma and that pharma needs to be engaged with patients more directly and that they should be listening to online patient communities and reaching out to patient advocates as a source of feedback and information. As Ann Bartlett pointed out given her diabetes, she is married to pharma for the rest of her life. Alicia Staley pointed out that different conditions require different engagement from pharma, but emphasized that better communication between pharma and the individuals taking their products can only help improve the quality of treatment.

Obviously, more and more Americans go online for answers to health questions, online patient communities are a critical source of relevant information and support. However, I was also impressed at e-Patient Dave’s statement that online patient communities are the best source for the most cutting edge and current information on a given condition, due to the “lethal lag time” of 3-5 years that it takes for new information and studies to circulate in the medical community, let alone change the standard of care. He also stressed the value of connecting online with others who had been through what he was facing – “It’s like finding a family member with your condition.” Ann Bartlett also pointed to the key role online patient communities play in diabetes to provide support to a rapidly growing patient population that is confronting a shortage of endocrinologists.

It was encouraging to listen to these respected leaders of their communities articulate so clearly the power of patients helping patients online and the need for more direct engagement between pharma and online patient communities.