Our savvy e-patients over at NeuroTalk noticed the launch of a new service by the Michael J. Fox Foundation, one of the leading Parkinson’s disease advocacy and research organizations. The new service, called PD Online Research, is billed as a “new web community of scientists, industry professionals, grantmakers and financial investors dedicated to advancing the treatment, prevention, and cure of Parkinson’s disease.”
Notice a group missing from that list?
So did the members of NeuroTalk, who called the Michael J. Fox Foundation on the carpet for not including patients in this conversation at the onset.
The resulting discussion caught the eye of the Michael J. Fox Foundation and Michael Rogan, an Associate Director at the Foundation. In his note to the community, he said:
As a result of the SFN presentation, we received a number of inquiries from scientists wishing to sign up now, though PD Online Research will not launch until spring 2009. This led to our issuing a brief announcement last week on the MJFF site, directing scientists to a site where they can submit a membership application.
I am sorry to note that this brief announcement led to upset in the patient community because it described only a part of our efforts and suggested, by its incompleteness, that we were specifically excluding patients from our online plans. I want to take this opportunity to apologize for this poor communication and to stress that including patient voices in our new resources has been a primary consideration from the start and has been the subject of much discussion.
Which is great, but the site initially made no mention of patients being involved in the process (until after the NeuroTalk members started the thread discussing this oversight).
If, indeed, patients were an integral part of the new effort, then they should have been mentioned on the site at its launch. How can you “forget” to add perhaps the most important group of people to such an effort?
So now the MJFF is conducting a survey of patients to try and understand how the group of scientists, researchers and investors (?!) can benefit from their insights. Um, okay. But patients, not investors, are at the core of why you’re doing the things you’re doing. If you don’t know their place in the conversation in the first place, I’m not completely convinced you’re even on the same page as e-patients.
E-patients don’t want to be an afterthought to a community that is hunting down the cure for Parkinson’s. They want to be there, hand in hand with the researchers and the theorists, to try and tackle the problems that diseases like this spread, from perspectives that maybe not all researchers and theorists have thought of.
The Michael J. Fox Foundation is doing great work for Parkinson’s disease. I hope it continues the work by opening up and embracing e-patients in its PD Online Research efforts soon.