Stream: patient empowerment
Topic: Patient Innovator Track @ DevDays
Dave deBronkart (Aug 30 2019 at 06:26):
This is for discussion of this unprecedented event (It is, yes??), including how to reach out & find everyone who should know about the event, and/or logistics, and/or anything else.
Dave deBronkart (Aug 30 2019 at 06:30):
@Rien Wertheim 's announcment said "Know someone who might want to participate?"
To attract people will we use a so-called "snowball methodology," aka plain old word-of-mouth networking? Or can we be more methodical about this?
We know the T1Diabetes world is already up to its eyeballs. What other patient communities? Let's think about reaching out to Inspire.com and other formal patient communities.
Rien Wertheim (Aug 30 2019 at 06:46):
Do you have a list of communities we can reach out @Dave deBronkart ?
Grahame Grieve (Aug 30 2019 at 09:59):
is it a stupid id to think about some kind of podcast thing out of the track? or vidcast?
Grahame Grieve (Aug 30 2019 at 09:59):
I'm going to push it in my media work now
Rien Wertheim (Aug 30 2019 at 10:04):
Not a stupid idea at all. We need someone with max exposure to do this.
John Moehrke (Aug 30 2019 at 14:00):
I promoted it on my blog -- https://healthcaresecprivacy.blogspot.com/2019/08/the-patient-innovator-track-at-devdays.html
Virginia Lorenzi (Sep 02 2019 at 02:48):
What about the rare disease communities?
Abbie Watson (Sep 09 2019 at 23:27):
Rare disease community, childhood illness community, disability community, biohacking community, and even the fitness community... it's actually relevant to a very large number of people. How those communities intersect with developer/programming communities, however...
Dave deBronkart (Sep 10 2019 at 15:42):
While on holiday I missed a lot of this thread, sorry. A quick first response:
- My site has an ad hoc list of patient communities
- The greatest leverage will come from connecting with the "meta-communities" (communities of communities) at SmartPatients, Inspire, and NORD
I have good contacts at the first two, and NORD is easy to reach.
My head is full of things we want to do before, during and after Atlanta to publicize this. Who among ye can be my organizing partner(s)? Lists are my downfall.
Last updated: Apr 12 2022 at 19:14 UTC
