Stream: patient empowerment
Topic: Newbie stream will be needed
Dave deBronkart (Mar 20 2019 at 15:18):
I'm putting this in the patient empowerment stream because I don't know of a better place for it, but it will need visibility among FHIR's strategy thinkers.
In yesterday's webinar for non-technicians @David Hay said a principal goal of FHIR is to democratize health IT. Two thoughts:
- Have we defined "democratize"?
- Presuming we mean to put power (access & control of data) in the hands of the citizen, this chat page will need a home for newbies who aren't technicians. I don't know exactly what "a home" means, but it includes:
- A dedicated stream (or set of streams maybe)
- A community of folks who welcome and patiently support clueless newbies who truly want to learn.
- And probably some carefully evolved tutorial videos
Lloyd McKenzie (Mar 20 2019 at 17:22):
Putting power in the hands of citizens is certainly part of it. The other is making good healthcare analytics, data sharing, etc. available to lower income countries so that quality of care starts to have less variability driven by where you are or how much money you have.
The 'implementers' stream tends to be pretty welcoming and patient with newbies. (To be honest, driven patients are often much less clueless than many of those who arrive here for help :)) However, we can certainly create a targeted stream if there's interest - and if this stream isn't the right one.)
Dave deBronkart (Mar 20 2019 at 17:24):
Thank you, @Lloyd McKenzie ! I have no desire to create a stream if our current set has no unfilled needs. Perhaps we just keep an eye on it.
It will be a great day when we have so many highly motivated people that we need a separate stream. :slight_smile: Perhaps we'll find is that all we need is a "start here" orientation for non-coders.
David Hay (Mar 20 2019 at 17:39):
I would have thought the patient empowerment stream would be the best for now. I suspect the implementers stream could be a bit overwhelming for non-technical folk... (both in terms of volume and content)
René Spronk (Mar 20 2019 at 17:52):
And probably some carefully evolved tutorial videos
We can certainly help to create those. However, this will have to be a cooperative effort between people like you who realise what FHIR value is for patients, and the (more technically minded) FHIR community. David is quite able to talk about FHIR from a clinician's perspective, which may be closer to what we need than a talk about FHIR from a software developer's perspective, or from a Health IT managers perspective. We have educational material geared to those audiences, but to create a good quality tutorial (video) we'd need to pick and choose.
Will you be attending the FHIR DevDays in Redmond? I'd like to suggest some sort of brainstorm session between the current FHIR educators and yourself to ensure we pick the right "unique selling points" for newbie (to FHIR) patients.
AFAIK you have also been asked to help in the creation of a "FHIR Summary for patients" page (to be included in the FHIR spec), that would tie in with this effort.
Dave deBronkart (Mar 20 2019 at 19:15):
Will you be attending the FHIR DevDays in Redmond?
I'd dearly love to but am on my own financially so would love to find a sponsor. Amsterdam was entirely at my own expense and I don't think I can afford another. So if anyone thinks of an interested sponsor, please connect us!
cooperative effort
Absolutely! Happy to be as involved as my availability allows.
René Spronk (Mar 21 2019 at 07:37):
A starter would be any ideas you'd have for the creation of a "FHIR Summary for patients" page (to be included in the FHIR spec)...
John Moehrke (Mar 21 2019 at 15:07):
I think this stream is a good place to discuss high and medium level patient empowerment use-cases. When they move to technical implementer topics they would find a more helpful group in the #implementers stream. That said, both are good.
Dave deBronkart (Mar 21 2019 at 19:28):
Good thought, John!
@René Spronk I have been keen to start something like that since Amsterdam. I need someone who can provide a fair amount support (to make sure I'm accurate and clear) with quick turnaround. I wonder if @Josh Mandel would be game, since he's been a fan of this consumer thing since as far back as I can remember. :-)
David Hay (Mar 21 2019 at 21:37):
I'd post your thoughts where they are accessible (like a google doc) and invite comments...
Josh Mandel (Mar 26 2019 at 16:59):
Agreed, and would be happy to help with feedback! (The quick turnaround bit, well, this past week has been travel :/)
Last updated: Apr 12 2022 at 19:14 UTC
