Stream: patient empowerment
Topic: Who's actively working on patient-facing? Roll call!
Dave deBronkart (Jun 10 2019 at 16:54):
I need / want to catalog both reality and work-in-process for everything patient-facing in FHIR. I will keep updating this message.
@John Moehrke points to The smarthealthit app gallery (may not be complete, but there are 41 at this moment)
@Josh Mandel I was surprised to see SMART described as supporting patient-facing apps.
@Abigail Watson does your stuff have anything patient-ready yet?
@Michele Mottini submitted My Family Health Record (MyFHR)
Cancer survivor @Debi Willis (not yet on chat) at MyPatientLink.com and now MyLinks.com , which won ONC's 2016 "Best Consumer Health Data Aggregator" Challenge (Jan 2017 press release).
Posted by @Isaac Vetter:
- the healthsystems and FHIR endpoints that use Epic's FHIR and SMART on FHIR server to enable patient-facing apps. ... Epic's process doesn't require a specific healthsystem to approve a patient-facing app.
- Patient-facing apps that have chosen to use our developer program are listed at: https://apporchard.epic.com/Gallery
Josh Mandel (Jun 10 2019 at 17:29):
@Josh Mandel I was surprised to see SMART described as supporting patient-facing apps.
Why surprised? This has been a core use case from the beginning, and the SMART app launch is how consumer apps (e.g., Apple Health Records) connect to patient data (e.g., MyChart).
Grahame Grieve (Jun 10 2019 at 17:30):
We want to schedule a lunch time discussion around Patient advocacy this week - I will post further details later
Dave deBronkart (Jun 10 2019 at 17:34):
@Grahame Grieve I'm happy to have that lunch DAILY. @Josh Mandel 's question ("Why surprised?") illustrates why. I've been going around asking about consumer apps and NOBODY has said "Here, this works, and that works, and XYZ is almost ready." I have a feeling we have lots of stuff that's just waiting to be plucked / harvested and we just haven't connected the dots. HELP!
@Grahame Grieve remember, when I asked about patient use cases I pretty much got a blank response.
Doesn't need to be complicated - needs to be gathered and organized into something I could show the folks in my high school reunion gathering this summer. "Here - go get this. If you have high blood pressure, get that. If you just want to start organizing your records, get this."
Grahame Grieve (Jun 10 2019 at 17:36):
it would be good to get there, sure. But there's a gap between 'can be' and 'actually is' which is where we are working today. Interesting to get @Steve Posnack's opinion on this subject
Dave deBronkart (Jun 10 2019 at 17:41):
it would be good to get there, sure. But there's a gap between 'can be' and 'actually is'
Where's my giant animated eye-roll emoji??? Hm... :thinking:
SO! -- Is @Josh Mandel right (roughly "Waddaya mean?? This stuff already exists!") or Grahame ("there's a gap between can/could and is")?
To quote my previous msg: "I have a feeling we have lots of stuff that's just waiting to be plucked / harvested and we just haven't connected the dots."
Grahame Grieve (Jun 10 2019 at 17:43):
Josh said: smart-on-fhir always target this. Yep, it did, and it's worked: there are such apps in production. @Ricky Bloomfield @Ricky Sahu @Philip Parker + others that don't immediately jump to mind. But as yet, it hasn't turned into something canned in the way you are looking for . But we want it to be
Dave deBronkart (Jun 10 2019 at 17:43):
(deleted)
Grahame Grieve (Jun 10 2019 at 17:44):
Apple already is. Coral Health already is. I'm not sure about the FHIR community itself.... not sure where we go from here
Dave deBronkart (Jun 10 2019 at 17:45):
Good, @Ricky Bloomfield @Ricky Sahu @Philip Parker and others, please enter existing or announced products, or link me to a list that I can harvest to add to my list at top.
The FHIR site should have a list of patient-usable things, yes??
Ricky Bloomfield (Jun 10 2019 at 17:51):
Yeah, @Dave deBronkart, I think that the Argonaut IG has supported the patient-facing use case quite well. It requires the SMART Auth Guide.
Dave deBronkart (Jun 10 2019 at 17:54):
Thanks, Ricky. So, anyone, who can walk me through "supported the patient-facing use case" means, in ordinary consumer terms? I looked at it and it's nowhere near ready to "invite company to visit."
Ricky Bloomfield (Jun 10 2019 at 18:01):
I guess it depends on exactly what you want here. In simple terms, it means that a consumer can potentially connect to any health system who has published an API that is conformant to Argonaut. The Health app can currently connect to >300 organizations representing > 6600 locations in the US and growing all the time. This includes Epic, Cerner, athenahealth, CPSI, Labcorp, Quest, and very soon the VA. Many more EHRs coming, but I can't comment on that! :silence:
Grahame Grieve (Jun 10 2019 at 18:10):
so, sticking to my previous work - see http://www.healthintersections.com.au/?p=2921 - the 3 legs
Grahame Grieve (Jun 10 2019 at 18:10):
I feel as though
- the first leg, we have the basic standards
- the second leg, we have one of them
- the third leg, we're not there yet
Ricky Bloomfield (Jun 10 2019 at 18:11):
Well, #3 will never be complete- it's an ongoing process.
Grahame Grieve (Jun 10 2019 at 18:11):
what does a patient want? How about:
- get my records
- ask questions about them, get them corrected
- communicate with my care providers
- make appointments and get refills
Grahame Grieve (Jun 10 2019 at 18:11):
I feel as though we've done leg #2 for the first of those things in the list ....
Ricky Bloomfield (Jun 10 2019 at 18:12):
Yup, agree with that. So much more work to make a comprehensive experience. This is just the first baby step.
John Moehrke (Jun 10 2019 at 18:12):
surely there are patient facing apps that are multi-registered in the Epic orchard and Cerner fhir store... right?
Grahame Grieve (Jun 10 2019 at 18:13):
I think that language isn't quite correct - patient facing apps aren't registered in the stores?
John Moehrke (Jun 10 2019 at 18:13):
im not sure I understand what is not correct
Dave deBronkart (Jun 10 2019 at 18:14):
im not sure I understand what is not correct
BOOM! :-) If that doesn't describe my confusion and meta-confusion, nothing does. :-) Thank you @John Moehrke
Grahame Grieve (Jun 10 2019 at 18:14):
there are patient facing apps that work today against Epic, Cerner and others. In production. I'm not sure that they're registered in their stores
Ricky Bloomfield (Jun 10 2019 at 18:15):
I think Zulip has reached its limits here ... are you all up for speaking face-to-face? Or is that too low tech? ;)
John Moehrke (Jun 10 2019 at 18:15):
I was looking to call out Epic and Cerner to itemize the 3rd party apps that are patient facing.... It is hard to see that list as a mear mortal
Grahame Grieve (Jun 10 2019 at 18:15):
sure if we can find a time... lunch?
Grahame Grieve (Jun 10 2019 at 18:16):
yes that list is not public. @Isaac Vetter @Jenni Syed am I right?
Ricky Bloomfield (Jun 10 2019 at 18:16):
I already have a commitment at lunch, unfortunately.
Dave deBronkart (Jun 10 2019 at 18:16):
Well jeeze, guys. Should we start by taking a roll call of what DOES exist, and then taxonomize it?
IOW, the question in this thread title has more layers (legs?) than I realized.
Should we take roll, and for each item, tabulate which is at which leg?
Grahame Grieve (Jun 10 2019 at 18:17):
yeah that's why
Jenni Syed (Jun 10 2019 at 18:20):
The challenge with the "what is available" is the regulations that say we can't get in the middle. We do a lot of work with provider facing to validate, work out contacts, store icons, etc that we can't do with patient apps
Jenni Syed (Jun 10 2019 at 18:22):
But there are a ton of apps in our sandbox that are patient facing. Most have not made the jump to true production (as in, real traffic at a site using them). We have a few we've enabled by request of the developers into prod, but only a very small number have gone broad
Jenni Syed (Jun 10 2019 at 18:24):
I think there are definitely places the standards can help remove even more barriers/variation there
Grahame Grieve (Jun 10 2019 at 18:25):
... ok... are there any not on the current workplan?
Jenni Syed (Jun 10 2019 at 18:25):
having a much more broad registry/search for your doc or hospital etc is one big gap
Dave deBronkart (Jun 10 2019 at 18:25):
Thanks @Jenni Syed for the Cerner update.
So, all, does it make sense for us to take this census and get a feel for the population of apps at legs 1 2 & 3??
Dave deBronkart (Jun 10 2019 at 18:26):
That could at least let us look for any low-hanging fruit, and/or identify conspicuous gaps e.g. per Jenni's message just now. Like, "What's the space of possibilities and obstacles?"
Michele Mottini (Jun 10 2019 at 18:27):
We (CareEvolution) have a patient app in production since 2017 or so: https://careevolution.com/myfhr/ that uses FHIR to get data from multiple providers and combine the data (it can also get data from CDA, HealthKit, FitBit, Omron)
Grahame Grieve (Jun 10 2019 at 18:27):
hey Michele - are you here at DevDays?
Michele Mottini (Jun 10 2019 at 18:28):
No
Dave deBronkart (Jun 10 2019 at 18:28):
Thanks @Michele Mottini ! Adding it to the list at top of thread.
Jenni Syed (Jun 10 2019 at 18:28):
Also, it depends on what you define as patient engagement :) We have patient self-service apps that don't actually use the MU3 set of APIs or don't have the patient sign in.
Jenni Syed (Jun 10 2019 at 18:29):
those are often scheduling and registration related
Michele Mottini (Jun 10 2019 at 18:31):
..and we have another app to do research studies that can gather clinical data in the same way - so that researcher can get combined questionnaire responses + clinical data + wearables data: https://careevolution.com/rkstudio/
Dave deBronkart (Jun 10 2019 at 18:32):
Bless you for talking about definition(s) of patient engagement!
For our purposes here, I for one am just looking for any FHIR uses (apps in particular) that ordinary people ought to know about. Because if they don't, adoption will lag, and that's a shame.
Dave deBronkart (Jun 10 2019 at 18:34):
@Michele Mottini RKStudio seems not to touch consumers as users, at all, correct?
"[snip]and retrieve EMR data from your participants—with no programming or software development expertise required."
Michele Mottini (Jun 10 2019 at 18:36):
Depends if you consider study participants 'consumers' I guess
Dave deBronkart (Jun 10 2019 at 18:37):
No, I mean the patient as a hands-on USER of a software tool that's enabled by FHIR, using FHIR to move data around for the consumer's use.
Michele Mottini (Jun 10 2019 at 18:37):
Also, some of the studies we are working with are not exactly just studies - they have what you could call care management probably - like helping ALS patients participating in the study to eat more (that apparently helps with ALS)
Michele Mottini (Jun 10 2019 at 18:38):
using FHIR to move data around for the consumer's use.
Correct, RKStudio does not do that
Philip Parker (Jun 10 2019 at 19:12):
Hi Dave, there are lots of apps available now that allow patients to access their medical records from multiple healthcare providers and have those records aggregated together so the patient can easily view say their blood pressure over time.
In addition to CareEvolution and Apple Health, there's also Coral Health, Seqster, 1UpHealth, and likely a number of others that I haven’t come across yet.
There are still a decent number of barriers to patients actually getting their data via the apps though; some that should work themselves out over the next year and some that could likely persist. The biggest issue for a patient currently trying to use the apps is that there’s a pretty high probability that the app doesn’t support all, or even one, of the patient’s healthcare providers yet. Most EHR vendors set it up so that the apps need to be authorized by each provider organization individually before they can access the APIs. Because getting that authorization is very time-consuming for app companies, I haven’t seen an app yet that supports more than about 20-30% of provider organizations. A bunch of comments in the information blocking proposed rule called that issue out and proposed solutions though so hopefully it’s addressed quickly.
Dave deBronkart (Jun 10 2019 at 19:19):
Thanks, @Philip Parker. I hope it's clear that this thread is trying to resolve my confusion between "There's LOTS of consumer-facing FHIR stuff" and "It's time to figure out some patient use cases" etc. And it's been confusing because I've known things like Coral Health exist!
I've begun drafting a quick (and thoroughly wrong) Google Sheet as described above to start categorizing the state of the universe. Hope to publish the link here during lunch.
Isaac Vetter (Jun 10 2019 at 19:20):
Hi @Dave deBronkart , these are the healthsystems and FHIR endpoints that use Epic's FHIR and SMART on FHIR server to enable patient-facing apps. Unlike Philip's description above - Epic's process doesn't require a specific healthsystem to approve a patient-facing app.
Isaac Vetter (Jun 10 2019 at 19:20):
As Grahame suggests, we don't have a public list of all the patient apps that have used these endpoints. Patient-facing apps that have chosen to use our developer program are listed at: https://apporchard.epic.com/Gallery
Dave deBronkart (Jun 10 2019 at 19:24):
that use Epic's FHIR and SMART on FHIR server to enable patient-facing apps.
Parsing: "FHIR and SMART on FHIR server" - that's one server, yes?
Enable patient-facing apps? IOW, make it possible for some app out there to get data from (an?) Epic system? If so, what's different about patient-facing apps, from the server's POV?
John Moehrke (Jun 10 2019 at 19:25):
is the smarthealthit app gallery kept up to date? https://apps.smarthealthit.org/apps/category/patient-engagement
This is pointed to by fhir.org
Grahame Grieve (Jun 10 2019 at 19:25):
patient facing apps get a different kind of token. with access to one (or a very few) patient records. Where as provider apps get provider level access (e.g. to lots of patients)
Grahame Grieve (Jun 10 2019 at 19:25):
the systems have chosen to manage registration differently since the bsuiness arrangements are different
Isaac Vetter (Jun 10 2019 at 19:26):
Yes, what Grahame said. Also,
Parsing: "FHIR and SMART on FHIR server" - that's one server, yes?
Yes, in our implementation, but, I think, not all implementations.
Michele Mottini (Jun 10 2019 at 19:29):
is the smarthealthit app gallery kept up to date
It is up to the individual vendors / developers to register there (and keep the registration up to date) - so most likely 'no'
Dave deBronkart (Jun 10 2019 at 19:29):
Meta-question: too late now, but should this thread really be in the #consumer-apps stream, vs #patient-empowerment?
Grahame Grieve (Jun 10 2019 at 19:30):
maybe. but it's here ;-)
Dave deBronkart (Jun 10 2019 at 19:31):
It is up to the individual vendors / developers to register there (and keep the registration up to date) - so most likely 'no'
FWIW I'd say that shouldn't impede our initial census, which is our current "narrow"
Kelly Watson (Jun 11 2019 at 23:34):
Is there an in-person lunch discussion happening on this @Dave deBronkart? I'd be up for the discussion. I'm coming from the #wearenotwaiting community and developing software to help people with diabetes get their data off of disparate devices.
Dave deBronkart (Jun 11 2019 at 23:37):
Hi @Kelly Watson ! Two things.
- We have a pop-up on patient interests Weds 2:40-3:20 in Sonora
- I'd love also to have a Weds lunch table. Shall we? @Grahame Grieve suggested something similar.
Kelly Watson (Jun 11 2019 at 23:40):
I'm up for both. @Dave deBronkart
Dave deBronkart (Jun 11 2019 at 23:41):
See you there, then! And you can hunt me down at MoPoP if you're there.
David Hay (Jun 11 2019 at 23:56):
BTW the clinical table may be a good choice for the table ...
Dave deBronkart (Jun 12 2019 at 00:39):
LOL you want everything to be at the clinician table :-)
I grabbed a blank sign and wrote PATIENT TABLE on it ... let's try that
Lloyd McKenzie (Jun 12 2019 at 02:57):
So the patient table would be only for those who aren't wearing any other hats or would it be open to those who are willing to take their other hats off for a bit?
Ricky Sahu (Jun 12 2019 at 20:49):
@Dave deBronkart We will be displaying a list of patient facing apps on 1up at some point in the near future. I believe that'll be helpful to this cause and illustrate various patient facing use cases
Dave deBronkart (Jun 12 2019 at 20:50):
Good! Keep in touch!
Abbie Watson (Jun 12 2019 at 22:14):
Sorry for the delayed response, Dave. Please add Symptomatic - Timeline as being patient ready and designed for consumer use.
Bart Carlson (Jun 13 2019 at 02:40):
@Ricky Sahu @Dave deBronkart Shouldn't we also add a section to that list for patient facing enterprise solutions that go way beyond patient facing apps?
Dave deBronkart (Jun 13 2019 at 17:46):
@Bart Carlson @Ricky Sahu @Abigail Watson Will do. At what point should we turn this into a wiki? (I'm asking about HL7 tradition / practices)
Oops, just realized I can no longer edit my original list here - too old! I'll touch up the Google Doc I showed in yesterday's pop-up and come back with link later.
Lloyd McKenzie (Jun 13 2019 at 17:50):
We can put stuff on a wiki page under the FHIR section. Once we have a work group, we'll have our own section in Confluence which is probably a better place to maintain it. (HL7 is trying to migrate away from wiki.hl7.org - FHIR is a laggard in that space because we keep having more urgent priorities.) @Joshua Procious can you PM w/ Dave and get him set up with a userid on the wiki?
Joshua Procious (Jun 13 2019 at 17:52):
I'm on it!
Mikael Rinnetmäki (Jun 16 2019 at 08:08):
Sensotrend is bridging the gap between citizen-centric innovation (the open source development community with the Nightscout project and the WeAreNotWaiting hashtag) and the more formally organized healthcare in a couple of projects.
1) With the Ministry of Social and Health in Finland, we're bringing Nightscout data to the national Personal Health Record system. See https://stm.fi/en/artikkeli/-/asset_publisher/stm-palkitsi-kolme-hyvinvointisovellusten-kehittajaa (category C)
2) With HUS, one of the largest hospital systems in Europe, we're bringing Nightscout data to the datalake of the hospital system, to be available for Practitioners. See https://www.sitra.fi/en/articles/future-healthcare-data/
Both are interesting challenges for us from the regulatory perspective.
Virginia Lorenzi (Jun 17 2019 at 04:50):
Cerner, as far as I understand, does not have a list of 3rd party apps that are patient facing. This is because they only whitelist an application if a provider requests it. That is just in the process now. Epic has several patient facing apps. I have already tried out several and pulled my own data.
Virginia Lorenzi (Jun 17 2019 at 04:56):
Patient-facing apps I know of that can work in production with some APIs include MyFHR, MyLinks, Medlio, and 1uphealth. But I am sure there are more. But not lots more.
Grahame Grieve (Jun 17 2019 at 04:59):
and healthkit (Apple)
Virginia Lorenzi (Jun 17 2019 at 05:01):
Yup I meant in addition to Apple Health.
Jenni Syed (Jun 17 2019 at 14:06):
For Cerner's app store, that lists validated apps that are part of our code program (consumer apps can choose to join our code program to be listed on that page). We have another page that clients have access to that lists known apps that can be whitelisted in prod/are in prod and just needs to be requested
Brendan Keeler (Jun 18 2019 at 03:28):
Regarding Virginia's comment: The market right now has exhausted what's possible from freely open SMART on FHIR. There's only so many ways you can visualize the CCDS.
Brendan Keeler (Jun 18 2019 at 03:30):
The EHR app programs are logical next steps beyond that functionality but then you're rate limited in scaling in that you need to be enabled at each site by providers, rather than patients having free choice.
Grahame Grieve (Jun 18 2019 at 03:33):
here in Australia I propose that we have a single central registry of patient apps that are required to be allowed by provider institutions. This feels like it would be successful here, but I must be clear: It hasn't been tested outside a small design team
Grahame Grieve (Jun 18 2019 at 03:34):
There's some crypto challenges in that too.
Dave deBronkart (Jun 18 2019 at 13:15):
Jumping back to Monday at MS, June 10 - from Ricky:
I guess it depends on exactly what you want here. In simple terms, it means that a consumer can potentially connect to any health system who has published an API that is conformant to Argonaut.
It's probably apparent by now, but from my POV far outside the FHIRside, I want us (the nascent PWG / Patient Workgroup) to convert that filter into something intelligible / usable by ordinary people. Like, enumerate those systems, with how-to's.
Dave deBronkart (Jun 18 2019 at 13:39):
... There's only so many ways you can visualize the CCDS.
@Brendan Keeler This would have been useful advice a week ago when I started to catalog everything in the SMART on FHIR gallery :slight_smile: Thanks!
Last updated: Apr 12 2022 at 19:14 UTC
