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.
Pardon me for getting a little bit informal, as folks do over on Twitter:
WTF??
I really wonder what Michael J. Fox himself thinks about this.
John, I’m really grateful for your incisive insights here. I’d be interested in talking (like, by telephone) to the people running this project, to explore what’s in their heads. Sometimes when I talk with someone about things like this, it turns out they just haven’t had their head turn around to REALLY see the patient as at the CENTER.
I’m going to have to dig out Microsoft’s “Copernican Shift” slides. I haven’t yet spoken to those particular people at MJFF, but from what you say, I have a strong suspicion that they still see the HC industry as being at the center, and now they’re wondering what the orbiting patients might have to offer to them, still at the center. That’s very different from seeing the patients as being at the center.
I am a Parkinson’s Disease patient, diagnosed at the age of 30, and I have now been a patient for
15 years…
In 2000 I attended a group of Parkinson’s Disease Patients from all over the the USA,we
were called to help get the word out for a cure.
That was when Michael J Fox was with PAN,the Parkinson’s Action Network,
We – the patient advocates helped Michael Fox and Joan Samuelson by going to speak with Congressmen and Congresswomen about our convictions to finding the Cure for Parkinson’s disease.
Many of those same PD advocate’s have found an online home at “Neurotalk’s – PD Forum” –
a very large thank you to Doc John Grohol gracious invitation for filling the need for a support system with other e-patients,and I am very grateful for this awesome gift of help,
at absolutely no charge to us – “the E-Patient’s.
What we helped begin in 2000 – we feel very slighted by the MJFF, when we have been kept out of meetings because we might bother the doctors and the other scientists.
These specialist’s would have better imput –
if we the patients were available to add our personal knowledge of what only an patient can know from living with illness.
we all will tell you – if it is possible, we would love to have our health regained.
This is what all the organizations tell us the goal is – “A Cure”.
Perhaps we the e-patients, can be helpful through
Neurotalk online symposiums, or the MJFF can hold
e-meetings with us.
Since We the same “Parkinson’s disease patient advocates”- who were called upon to help advocate in the year 2000 when Michael J Fox first went to DC.
I feel our lives are more important than just a bunch of statistics, our information is priceless to those – in search of a Cure…
I would like to thank Dr.John Grohol for being a champion for us, by reminding
those with foundations to remember who they are supporting, the “the e-patient’s & the patient advocates who helped in the beginning, and we would like to continue to meet this challenge, to help find the Cure.
sincerely,
tena
i agree wholeheartedly that PWP can and should be much more involved in the whole research process, and i appreciate Dr. John’s support of that cause. however, i think the apparent goals of the article would have been equally well achieved without the implication mjff was lying.
jayne