Stream: patient empowerment
Topic: PHR apps?
John Moehrke (Oct 29 2019 at 19:02):
Has anyone looked into "OneRecord" – onerecord.com ??? I got a response that they have a FHIR based PHR that is fully in the patient's hands. The web-site is not all that clear. Pretty, but not clear.
Dave deBronkart (Oct 30 2019 at 15:05):
I've vaguely heard of them, in the pile of many similar-sounding things, but that's all. WEIRD that they don't have any names on the site.
John Moehrke (Jan 13 2020 at 20:04):
any suggestions for standalone PHR that is FHIR enabled?
John Moehrke (Jan 13 2020 at 20:04):
https://www.symptomatic.io/marketing-page
John Moehrke (Jan 13 2020 at 20:10):
Interesting article on building a PHR out of Azure FHIR service https://www.darenasolutions.com/blog/hit-refresh-from-phr-to-pfr-personal-fhir-record-with-microsoft-fhir-server
Debi Willis (Jan 13 2020 at 20:14):
Hi John. I’m not sure of your question. If you are looking for FHIR enabled PHRs, MyLinks can be found here: MyLinks.com.
John Moehrke (Jan 13 2020 at 20:22):
thanks. I will look at that. It didn't come up on simple searches.
Dave deBronkart (Jan 13 2020 at 20:31):
This is a great question - when I first started hanging out in this loony bin :-) I asked the same, and got a list of developers who had attested to offering one thing or another, but to this day we don't have a published list. Is it time?
To your question, I agree with @Debi Willis - I was going to ask, "What exactly do you mean by 'PHR'?" and "What do you mean by FHIR enabled?"
You linked to @Abigail Watson 's Symptomatic, and Debi spoke up about hers... @Philip Parker has Coral Health, and I know there are others. Indeed, maybe it's time to create a "FHIR marketplace" (FHIRplace?)
Debi Willis (Jan 13 2020 at 20:33):
FHIRplace :)
John Moehrke (Jan 13 2020 at 20:39):
I think we could catalog what we know on a confluence page.
John Moehrke (Jan 13 2020 at 20:43):
For PHR -- I want a standalone solution, not one associated with an EHR vendor or healthcare provider. It thus only is under my control, the data must not flow unless I direct it (consent), and it must flow when I do direct it to communicate (don't second guess me). It must support connecting to EHR(s) by either being a FHIR app in their app-store, or supporting FHIR apps. It clearly needs to support FHIR apps so that I can authorize any FHIR app I choose (dynamic app registration preferred, but understand a desire to have an app-store of validated apps).
John Moehrke (Jan 13 2020 at 20:44):
should support delegation so that I can authorize an agent (child, parent, spouse, legal, etc).
John Moehrke (Jan 13 2020 at 20:46):
There is a PHR-S functional model defined in HL7.. I wonder if we should review that as a group???
https://www.hl7.org/implement/standards/product_brief.cfm?product_id=88
Dave deBronkart (Jan 13 2020 at 20:53):
I apologize that I need to ask @Josh Mandel to again tell us which page he steered me to last summer that listed a bunch of I-don't-remember-what apps. (This won't answer John's question but they'll illustrate what we're NOT looking for, and maybe give those guys a nudge to achieve something better.)
John Moehrke (Jan 13 2020 at 21:08):
FHIRplace :)
hmmm, so would we be throwing various PHR products into the FHIRplace?
Josh Mandel (Jan 13 2020 at 21:34):
Probably apps.fhir.org ?
Michele Mottini (Jan 13 2020 at 21:39):
Ours is here: https://careevolution.com/myfhr/
Lloyd McKenzie (Jan 13 2020 at 22:05):
hmmm, so would we be throwing various PHR products into the FHIRplace?
Maybe we just hang them by the FHIRplace rather than throwing them in - in the hopes that they'll soon be full of useful healthcare data? :)
John Moehrke (Jan 13 2020 at 22:06):
oh, how Christmas related...
John Moehrke (Jan 13 2020 at 22:06):
it is very homey
Lloyd McKenzie (Jan 13 2020 at 22:07):
The question is - who is Santa Clause?
John Moehrke (Jan 13 2020 at 22:08):
Dave
Dave deBronkart (Jan 13 2020 at 23:21):
....One more degree of drift and we'll have to figure out how to transplant this into Social.....
hmmm, so would we be throwing various PHR products into the FHIRplace?
YOU GUYS!!!! :-)
Lloyd: "who is Santa Clause?"
Moehrke: "Dave"
YOU GUYS!!! https://www.youtube.com/watch?v=EpL565sEKCc
Dave deBronkart (Jan 13 2020 at 23:25):
I hear that when we meet for DevDays in Cleveland, @Rien Wertheim is going to set us up with TWO dances at the Rock & Roll Hall of Fame there, in honor of Jerry Lee Lewis, to be marketed as "Great Balls of FHIR"
Mikael Rinnetmäki (Jan 14 2020 at 08:37):
@John Moehrke, the #finnish PHR is a stand-alone solution in a sense that it's not directly tied to any EHR system. It's a government backed independent service. It does its best to keep the data under citizen's control. It could do a bit better in granularity regarding consents. A new legislation concerning the Finnish PHR is currently under review. And yes, it's all FHIR.
Mikael Rinnetmäki (Jan 14 2020 at 08:38):
https://www.kanta.fi/en/system-developers/kanta-phr
John Moehrke (Jan 14 2020 at 13:24):
John Moehrke, the #finnish PHR is a stand-alone solution in a sense that it's not directly tied to any EHR system. It's a government backed independent service. It does its best to keep the data under citizen's control. It could do a bit better in granularity regarding consents. A new legislation concerning the Finnish PHR is currently under review. And yes, it's all FHIR.
That is fantastic. Thanks for the data. Is this based on a software stack designed for this? Or is that solution available for others?
Mikael Rinnetmäki (Jan 14 2020 at 13:32):
I believe it used the HAPI server initially. It has undergone quite a few changes since its inception, so I don't know the current status. But it's (unfortunately) not maintained in open source.
Mikael Rinnetmäki (Jan 14 2020 at 13:32):
Feel free to join the #finnish PHR channel and discuss more there!
Last updated: Apr 12 2022 at 19:14 UTC
