Stream: patient empowerment
Topic: FHIR adoption
Michele Mottini (Jun 13 2019 at 14:57):
Dave deBronkart (Jun 13 2019 at 16:13):
What's this about, @Michele Mottini ? Did I miss some earlier message with context?
Michele Mottini (Jun 13 2019 at 17:26):
It is an example of the bottleneck I wrote about: providers considering FHIR end point a chore to be done as late as possible + installation requiring a lot of work
Michele Mottini (Jun 13 2019 at 17:26):
Resulting in no FHIR end point available
Michele Mottini (Jun 13 2019 at 17:27):
And then even when it is available you have to go through the process of enabling the apps to use it - for each app
Dave deBronkart (Jun 13 2019 at 17:53):
[Quoting…]
Okay - for other readers that was in a different thread, Consumer advice to HL7, in this message https://chat.fhir.org/#narrow/stream/179262-patient-empowerment/topic/Consumer.20ADVICE.20to.20HL7.3F/near/167909473
Jenni Syed (Jun 14 2019 at 15:01):
Just to clarify that thread, it sounds like the client in question has chosen to delay their FHIR go live behind a very large upgrade to their core EHR.
Jenni Syed (Jun 14 2019 at 15:03):
And right now, I would agree that many see this as secondary to the primary function of their EHR. Hopefully that will change as time goes on - there's a lot of impression still that there's too much "hype" around FHIR
Jenni Syed (Jun 14 2019 at 15:04):
Eventually I would hope most would view it as a core part of their EHR functionality
Michele Mottini (Jun 14 2019 at 15:10):
Hope so.. the situation now is that we have been technically able to connect to Cerner and Allscripts systems since early 2017 and we have no production connection after 2+ years (the xxx provider in my screen shot is our best shot at getting a production connection with a Cerner system - in October 2019)
Jenni Syed (Jun 14 2019 at 15:12):
@Michele Mottini is your primary challenge on getting clients to whitelist, getting patients to use it (eg: marketing), or something else?
Michele Mottini (Jun 14 2019 at 15:13):
clients to whitelist
Jenni Syed (Jun 14 2019 at 15:13):
But if they whitelist it, there are patients waiting to use it?
Jenni Syed (Jun 14 2019 at 15:14):
If so, that seems like a misunderstanding by them around the regulations getting ready to go into effect...
Jenni Syed (Jun 14 2019 at 15:14):
IE: if they are resisting the whitelist request/not passing it on to us
Michele Mottini (Jun 14 2019 at 15:16):
But if they whitelist it, there are patients waiting to use it?
Don't know - we are not marketing the app now - we immediately got a 1 star review in the app store 'I cannot connect to any of my providers'
Jenni Syed (Jun 14 2019 at 15:16):
If it's the install delays, that's also very useful to know.
Michele Mottini (Jun 14 2019 at 15:17):
Install delay - the FHIR end point is not up yet and they put it at the bottom of their priorities - hence October
Jenni Syed (Jun 14 2019 at 15:31):
Out of curiosity, when you connect, how does the patient identify which FHIR server/provider they use?
Jenni Syed (Jun 14 2019 at 15:31):
I know Apple does a very deep engagement to build this out with every client
Jenni Syed (Jun 14 2019 at 15:33):
One of the challenges we have concerns about is, even if the app is whitelisted, and the FHIR server is there, a patient may not know that "Dr. Bob's Family Practice" is affiliated with a larger health system
Jenni Syed (Jun 14 2019 at 15:33):
IE: the provider directory that is missing
Michele Mottini (Jun 14 2019 at 15:35):
how does the patient identify which FHIR server/provider they use
We look up the providers and we add descriptive name and meta-data - like addresses, state(s), zip codes - to make search easier for the patient
Not perfect and quite time-consuming but the best we could come up with
Michele Mottini (Jun 14 2019 at 15:36):
(you can see the data we added at https://fhirendpoints.github.io/)
Jenni Syed (Jun 14 2019 at 15:38):
ok, so Dr Bob's Family Practice would be a "keyword" in that list
Jenni Syed (Jun 14 2019 at 15:39):
but not necessarily the address for that specific site, just larger health system
Jenni Syed (Jun 14 2019 at 15:39):
well, states :)
Michele Mottini (Jun 14 2019 at 15:41):
If Dr. Bob's Family Practice has its own FHIR end point (that seems to be the case with Cerner's) it will show up as a separate entry in the list - but hopefully with a more descriptive name including the health system and address / location data
Jenni Syed (Jun 14 2019 at 15:41):
It depends :)
Jenni Syed (Jun 14 2019 at 15:42):
But yes, sometimes
Dave deBronkart (Jun 14 2019 at 16:09):
Hey y'all, I'm lost - why is this thread "FHIR Adoption" in the patient empowerment stream?
Michele Mottini (Jun 14 2019 at 16:12):
Because FHIR adoption is necessary for patient empowerment - if FHIR end points are not actually available patient cannot get data, no matter how good the standard is
Jenni Syed (Jun 14 2019 at 16:12):
Essentially: many providers are trying to push it off as late as they can per the rule b/c they don't yet see the benefit it provides
Michele Mottini (Jun 14 2019 at 16:13):
(also: patients have to be able to _find_ their provider to connect to - that is the last point Jenni was making)
Jenni Syed (Jun 14 2019 at 16:13):
Also @Michele Mottini isn't there also a challenge that some systems didn't choose to use FHIR to meet the CCDS requirement?
Dave deBronkart (Jun 14 2019 at 16:13):
Well, the same could be said about the availability of electricity and internet, no? :-)
From the POV of a patient/consumer, that reasoning seems to be a stretch - it would be better as a separate stream. (I won't start a fight about it - just observing.)
Michele Mottini (Jun 14 2019 at 16:14):
Oh sure - there is that as well
Michele Mottini (Jun 14 2019 at 16:14):
Electricity and the internet are widely available, FHIR end points are not
Dave deBronkart (Jun 14 2019 at 16:15):
(also: patients have to be able to _find_ their provider to connect to - that is the last point Jenni was making)
Again, I hope we can separate the issue of "FHIR availability to consumers" from the issue of "how to empower consumers via data."
@Debi Willis and anyone else, your thoughts?
Michele Mottini (Jun 14 2019 at 16:16):
To empower consumers via data you must have the data - that's currently mostly not the case - so I'd say that's the first problem to (try to) solve
Debi Willis (Jun 14 2019 at 16:28):
The topics are connected but are two different issues. We need to focus on patients’ current needs and future needs so we can get a better understanding of where there might be holes in the standards. For instance, as a patient I want to be able to not only use an application to download my data but I want to be able to notify my provider that they have errors in my chart. Statistics are that over 80% of patients have errors in their charts with some of them being pretty significant. Right now, I have to go to the clinic website, find a specific document and print it out, indicate what is wrong in my chart and sign it, then mail it to the clinic. HIPAA gives me the right to request that errors be corrected. But we need to find an easy technical standard to make that happen. This is just a single example. There are many many other things that patients want to do. It’s important that we listen to those requests so we can present these types of issues to HL7.
Dave deBronkart (Jun 14 2019 at 16:30):
Thanks @Debi Willis ... would you suggest going forward that this topic (adoption of FHIR by providers) continue in the Patient Empowerment stream, or would it make more sense elsewhere, in your view? (For those who don't know, I'm particularly asking Debi since her name is listed on the work group proposal as a co-chair)
Michele Mottini (Jun 14 2019 at 16:30):
I disagree: the main problem we have is adoption and deployment of the current standard - adding more stuff to the standard will actually hinder that (even more)
Dave deBronkart (Jun 14 2019 at 16:31):
@Michele Mottini what message or item are you disagreeing with?
Michele Mottini (Jun 14 2019 at 16:32):
With:
It’s important that we listen to those requests so we can present these types of issues to HL7.
Michele Mottini (Jun 14 2019 at 16:36):
To be starker: the idea of deploying APIs and give patient app access and let 1000 flowers bloom is currently failing (like 'let each state build their HIE and all the data will flow' failed before) - we should try to make it not fail before worrying about anything else
Michele Mottini (Jun 14 2019 at 16:37):
(talking about the US)
Debi Willis (Jun 14 2019 at 16:40):
If there are no groups addressing FHIR adoption within clinics, it does make sense to consider it part of patient empowerment. Patient empowerment is much more than technical standards. That’s one of the things we discussed in the meeting at DevDays. We need to get a broad understanding of patient needs. Perhaps we can later then segment them into technical issues, business issues, and workflow issues (and any other sub topic that makes sense) in the work group. So if FHIR adoption is not being discussed anywhere else, it makes sense to have it part of patient empowerment because it does impact a patient’s ability to BE empowered. Does anyone know if this topic is listed anywhere else?
Lloyd McKenzie (Jun 14 2019 at 17:11):
If anyone's going to beat up on care providers and get them exposing their interfaces to patient apps sooner, it's probably going to be patient empowerment folks, so I think discussing the challenges around that here makes sense. (Frankly, the more people we have paying attention to this stream and the more 'interesting' conversations we have here, the better :>) It is possible to mute a topic within a stream if it's not of interest.
Debi Willis (Jun 14 2019 at 17:29):
I agree. Patients will be the driving force to make all of the hard work of the FHIR community successful. Patients have the law standing with them and a choice to switch to a provider who does have a FHIR endpoint. I talked to a large health system who said they did not want their patients downloading their data because they were “already in enough trouble with the insurance companies about all the errors in patient charts” and they didn’t want their patients to also be upset when they saw all the errors in their charts. Only patients can break down this barrier.
Lloyd McKenzie (Jun 14 2019 at 17:42):
Hope you were able to reframe their thinking to "Errors in the charts are obviously a problem for your ability to deliver quality and efficient care. Making patients a part of the loop will help you to identify and address error sources more quickly. Just set an expectation about what they should expect and how they can help."
Debi Willis (Jun 14 2019 at 19:37):
I did discuss that with them. They were happier keeping the patients from seeing their data. I don’t think they understand the law. Another issue that needs to be addressed....Patient and provider education.
Dave deBronkart (Jun 14 2019 at 20:10):
I did discuss that with them. They were happier keeping the patients from seeing their data [because of all the errors]
An essential thing to be understood by anyone involved in outreach (particularly advocating for change) is the issue of "loss aversion." The field of behavioral economics has documented (yes with peer reviewed research) that a potential risk is TWICE as motivating as a potential gain.
Many change activists respond to this by getting angry that people aren't more rational. This is not a useful perspective, as any failed sales person will attest (if honest). Whether I like it or not, the useful perspective is to have empathy for the people we're asking to TAKE a risk for us.
And I know of cases in hospitals where people have gotten seriously pounded over errors in the chart (or in billing data), merely because the people upstairs were looking for someone to take the hit.
So - as we here all know - the most potent motivator is to appeal to people's desire to save lives, or help a sick kid, etc. I think this is why (as several people said this week) patient stories are so important in shining the light onto the path we want to travel.
Dave deBronkart (Jun 14 2019 at 20:13):
btw, we do have a powerful partner in this phase of the work: The OpenNotes movement has years of experience and dozens of published articles on the benefits letting patients see the full text of their visit notes. If others here want, I can say more in another thread. (I was close to Patient Zero in the original OpenNotes trial and am still on their advisory board.)
Grahame Grieve (Jun 14 2019 at 21:45):
some takeaways from this for me:
- our patient cover sheets should clearly identify what the standard doesn't do
- how do we get a better relationship with open notes?
- I really wish we could get argonaut to at least strat specifying a "correct this" api, but since institutions are fiercely opposed (even though i think that's self-harming) I see why they haven't. I'd be interested in some discussion somewhere on what that would look like
Grahame Grieve (Jun 14 2019 at 21:46):
(btw, I do very much think that this discussion lies in the realm of patient empowerment. And in the media)
Dave deBronkart (Jun 14 2019 at 21:48):
As I said, I'm on the OpenNotes advisory board, so if we put together an approach letter (or whatever), I'm happy to introduce.
They sometimes seem to have their own agenda so I can't guarantee anything but at very least we can point to their well funded research [e.g. Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects], as I said.
Grahame Grieve (Jun 14 2019 at 21:56):
joint event somewhere? that's a very useful way to get things going....
Josh Mandel (Jun 14 2019 at 22:02):
I'm pretty sure they some of my Providers don't evenknow that my notes are available through their API -- which is kind of awesome.
Debi Willis (Jun 14 2019 at 22:09):
Statistics are that 80%+ patients have errors in their chart. Medical errors are the third leading cause of death in the US. A lot of those errors can be traced back to incorrect or missing data. HIPAA gives us the right to request that our medical information is corrected. The covered entity has 60 days to act on the request for an amendment. As more patients begin downloading their data via FHIR applications, I anticipate a growing need to automate the process. I would also like to see us start those discussions now.
Grahame Grieve (Jun 14 2019 at 22:12):
Dave deBronkart (Jun 15 2019 at 01:48):
@Debi Willis although of course all the points you cite are true, in reality (from everything I've heard for years) there are no teeth to the "right" to have errors corrected. So I think we need to be careful about assuming there will be cops pointing guns at error holders.
But that doesn't mean we can't express interest in finding ways to help people do the right thing!
Re the Geisinger study on 80% of charts containing errors: the great majority of them were obsolete medication info, often "I stopped taking that two years ago, you idiots." But that info can be important to fix, and could be true "low-hanging fruit," because it's so simple to correct. (It's not like asking a hospital to correct a disputed diagnosis.)
So I wonder if this could be an easy first use case: "Find and fix (or verify) obsolete medication lists!"
Dave deBronkart (Jun 15 2019 at 01:50):
I'm pretty sure they some of my Providers don't even know that my notes are available through their API -- which is kind of awesome.
Are visit notes available via API??
@Grahame Grieve as far as I know, OpenNotes is not a technology (e.g. with a standard API) - it's merely a policy / business practice of making notes available through whatever patient portal. But maybe I'm out of date! I'd love to hear otherwise.
Grahame Grieve (Jun 15 2019 at 01:57):
it's a policy / business practice of making notes available through whatever patient portal
right. So it's a policy thing. We're a standard for actually doing that. So our overlap: they want it (by portal?), we can do it (by API) - which is better, per Dana Lewis - are we actually doing it? they can advocate for hospitals to actually make the API available - which (per Jenni), they are not prioritising
Dave deBronkart (Jun 15 2019 at 02:42):
We're a standard for actually doing that
I can easily see that! I still don't get what a "joint event" would be.
Grahame Grieve (Jun 15 2019 at 02:53):
typically, one of the leads of FHIR speaking at an OpenNotes event or vice versa.
Dave deBronkart (Jun 15 2019 at 03:09):
Ah, grasshopper, the delusion is revealed: “OpenNotes” event does not exist as a Thing. :-) Because there has never been a discussion of how to do it - only whether.
It might conceivably, though. We could propose our burgeoning standard as The Obvious Right Way.
Grahame Grieve (Jun 15 2019 at 03:13):
One ring to bind them all....
Virginia Lorenzi (Jun 15 2019 at 05:33):
Regarding provider organization interest - patient generated data is of value. I agree its tricky getting it in but its a valuable data source yet to be tapped. When I talk to clinicians about patient facing technology there is always some datapoint that would like to receive from the patients. As far as patient found errors we spend time and effort to do that manually.
Virginia Lorenzi (Jun 15 2019 at 05:34):
I agree that a published list of endpoints is needed.
Virginia Lorenzi (Jun 15 2019 at 05:38):
There are numerous patient focused events which we could have a fhir speaker. Anyway I love this topic so just chiming in :)
Grahame Grieve (Jun 15 2019 at 06:05):
If you let me / us know I can see whether we find speakers
Debi Willis (Jun 15 2019 at 13:58):
Letting the doctor know (via use of FHIR standards) that they have errors/missing items in my medicbation list is a great start. Letting them know about undocumented allergies would be a good second use case.
Michele Mottini (Jun 17 2019 at 12:53):
I agree that a published list of endpoints is needed.
@Virginia Lorenzi : there is a published list at https://fhirendpoints.github.io - can we have the New York Presbyterian end points to add to it?
Josh Mandel (Jun 17 2019 at 13:12):
Who maintains this? The repository appears anonymous.
Josh Mandel (Jun 17 2019 at 13:12):
I also do not see any policies about what should the included or help people can add new items to the list or how it is maintained with respect to existing lists.
Josh Mandel (Jun 17 2019 at 13:13):
To be clear, I love the initiative behind this but I also know other projects that are combining similar lists on the fly from existing vendor publications, and it would be nice to have clear expectations. (FYI @Dan Gottlieb )
Michele Mottini (Jun 17 2019 at 13:19):
Who maintains this? The repository appears anonymous.
Us (CareEvolution). The repo is separate from all the rest of our stuff and linked to a new stand-alone email address so we can transfer ownership to some other better suited organization - if one shows up
Michele Mottini (Jun 17 2019 at 13:21):
I also do not see any policies about what should the included or help people can add new items to the list or how it is maintained with respect to existing lists.
There is no policy - email at the address listed there and we'll do our best to add the end point (the list is an export of the list we maintain internally for our myFHR / myDataHelps app)
Michele Mottini (Jun 17 2019 at 13:26):
Currently we periodically add what Epic publishes, and we'll try to add some of the end point Cerner publishes - the ones we can identify
Michele Mottini (Jun 17 2019 at 13:26):
If you have something better we are happy to drop this and give you our data
Josh Mandel (Jun 17 2019 at 14:29):
Thanks! would be great to add this information to a read me and link to that read me from the webpage. Knowing that this is the database behind your commercial product gives me a lot more faith in it :-)
Michele Mottini (Jun 18 2019 at 19:21):
would be great to add this information
Done
Andrea Downing (Jun 03 2021 at 19:08):
Hi everyone, I'm realizing FHIR Dev Days is next week and I'm diving deep to learn all the things, especially the security / privacy part so that I can help patients understand and trust this new world. Being a nerd I'm trying to wrap start to learn the technical side, and may even work to get certification. Thankful to @Dave deBronkart for connecting me to this group. Does anyone know if there are ePatient scholarships for FHIR Dev days?
Lloyd McKenzie (Jun 04 2021 at 03:10):
@Rien Wertheim
Rien Wertheim (Jun 04 2021 at 07:19):
Hi @Andrea Downing , we don't have patient scholarships for devdays. In fact, you're the first to ask! Patients participating in the patient track (presenters) have free access to the event.
John Keyes (Jun 04 2021 at 14:58):
In fact as a patient track presenter at a previous DevDays (Fall 2019), I highly recommend doing this! It was worthwhile in so many ways.
Andrea Downing (Jun 04 2021 at 16:07):
If I'm the first to ask and hope @Dave deBronkart would be proud as he's the one who helped me get connected to this amazing community ( ; If it's not too late I'd love to join the patient track. I kind of live in both worlds - as an ePatient in BRCA Community and someone w/ background in tech. I'm learning and starting to see use cases for what I'm doing with The Light Collective (https://lightcollective.org).
Dave deBronkart (Jun 04 2021 at 16:21):
Rien Wertheim said:
Hi Andrea Downing , we don't have patient scholarships for devdays. In fact, you're the first to ask!
LOL maybe the first one you've heard about but certainly not the first time this has been discussed. :smile: In previous years the point has been made that there are definite per-person costs to the events and this is not a huge HIMSS-style or HDP-style event, and I believe that even in the virtual era there are per-person Whova costs. But I'm not involved in that side of the movement.
Dave deBronkart (Jun 04 2021 at 16:23):
DevDays is a joint venture between Firely and HL7. For HL7 events in general (WGM, Connectathon) there have been numerous requests from non-employee members of the Patient Empowerment WG for scholarships but HL7 is under financial stress and that's always been a no.
OTOH, patient involvement in FHIR first showed up at DevDays and first expanded at DevDays! So perhaps this might be another innovation.
Next week's patient plenary talks (by @Chris Brancato and Katie McCurdy) are eye-openers, which will expand everyone's horizons on what patient participation can be. (I can say that because as Patient Track moderator I know what they're doing. :-))
Andrea Downing (Jun 04 2021 at 16:43):
Ah HA!!
Katie is a wonderful speaker and definitely can say this is expanding my horizons. :tada:
Rien Wertheim (Jun 07 2021 at 20:40):
Thanks for answering @Andrea Downing 's question adequately, @Dave deBronkart .
Last updated: Apr 12 2022 at 19:14 UTC
