Stream: social
Topic: New User Needs Learning Guidance
Rhea Campbell (Sep 14 2020 at 16:49):
Hi all, I am a non technical founder of a primary care healthcare practice. We're developing a digital front door for our customers to access their appointments, obtain virtual care, see & request prescription refills, pull data from wearables and so on. This app will push and pull data from our EHR and package this in one nicely branded, easy-to-use application on a smart phone or device. The second phase of our digital evolution is to build a population health management tool that will pull data from our EHR and all other outside sources of healthcare providers ie: labs, hospitals and health systems (so EPIC, Cerner...), TPA's for claims data and so on for a full 360 degree view of all healthcare consumed and scheduled for any one of our patients. I don't know what I don't know about APIs, FHIR, Hl7. Where should someone like me start to get educated on healthcare software development and FHIR standards?
Lloyd McKenzie (Sep 14 2020 at 16:52):
For FHIR, I'd start with the spec itself. There are a number of intro pages linked at the top of the website that will guide you through what the spec contains and how to navigate it. If you're looking for more tutorial-style content, try Googling for "FHIR Devdays Videos" - that will take you to a treasure trove of 30-40 minute videos covering a wide range of aspects of the standard - from simple intros to deep dives on different technical topics.
Dave deBronkart (Sep 14 2020 at 18:28):
Here's another great specimen of why Zulip needs pinned posts! Or maybe we need a Newbies Start Here stream.
Dave deBronkart (Sep 14 2020 at 18:34):
@Rhea I see from your address that you're a founder of Imagine MD in Chicago. First, thanks for doing that! Second, triple-thanks for going FHIR from the outset! Please do make extensive use of this community. I've found that the list of chat streams on this sight is at least as useful as the spec is, for understanding the FHIR world, because it reveals what people talk about while they're doing FHIR.
I suspect that your project may have some interest in the #patient empowerment stream, since insurrectionist practice models tend to favor including patients as active partners. Hope to see you there, as needs arise.
Rhea Campbell (Sep 14 2020 at 19:36):
Dave deBronkart said:
Rhea I see from your address that you're a founder of Imagine MD in Chicago. First, thanks for doing that! Second, triple-thanks for going FHIR from the outset! Please do make extensive use of this community. I've found that the list of chat streams on this sight is at least as useful as the spec is, for understanding the FHIR world, because it reveals what people talk about while they're doing FHIR.
I suspect that your project may have some interest in the #patient empowerment stream, since insurrectionist practice models tend to favor including patients as active partners. Hope to see you there, as needs arise.
Great to be here and to find an interesting group working hard to make healthcare more transparent, interconnected, useful and eventually less costly. I've been "lurking" around the streams reading and google searching terms I don't understand. Finding this platform has been very useful so far. Thanks for the direction and the responses.
René Spronk (Sep 15 2020 at 15:16):
We (during FHIR training courses) generally recommend the following intro videos:
• FHIR for Executives (TED-like talk), https://vimeo.com/112905640 (April 2019)
• Introduction to FHIR (general IT audience), https://vimeo.com/199173771 (June 2016)
• FHIR for Clinicians, https://www.youtube.com/watch?v=IYMWRLEwJws (June 2019)
Generic introductions are terribly hard to do well - if readers have other suggestions, please let us know..
David Pyke (Sep 15 2020 at 15:24):
The intro to FHIR Vimeo link doesn't seem to work for me. Do I need to be logged in to see it?
Dave deBronkart (Sep 15 2020 at 15:43):
David Pyke said:
The intro to FHIR Vimeo link doesn't seem to work for me. Do I need to be logged in to see it?
I can't see it, logged in or not. Nor does searching "Introduction to FHIR" on Vimeo. (Googling that title shows some videos but none near June 2016.)
Vassil Peytchev (Sep 15 2020 at 15:44):
(deleted)
John Silva (Sep 15 2020 at 18:58):
Maybe a more recent one from DevDays 2018 (in Boston) might be helpful: "A General Introduction to FHIR" https://www.youtube.com/watch?v=Px3564G-vw4
Dave deBronkart (Sep 15 2020 at 20:54):
Another really decent high-level intro for newbies is FHIR - 7 Most Important Facts in 7 Minutes (2018) by @Pavel Smirnov of Health Samurai.
Speaking of "accelerators" :-), I've found a new favorite way to watch learning YouTubes: turn on captioning and double the playback speed. Pavel's 7 minutes becomes 4, including pauses to consider a few things more. Now THAT's efficient.
Pavel Smirnov (Sep 15 2020 at 21:40):
Thanks, Dave. This was the first video on our channel. Now we have a lot of interesting content there from FHIR meetups and FHIR Starter conference, please explore and subscribe :) and we need to make a 2020 version of this one as time flies.
Dave deBronkart (Sep 15 2020 at 23:52):
Hey anyone, is there a FHIR blog where we might post a list of such "Welcome to FHIR" learning tools?
For that matter, does anyone in FHIR (or HL7 in general) have responsibility for "newcomer experience"? If not, I know I'll be doing something of the sort for patients in the Patient Empowerment WG page](https://confluence.hl7.org/display/PE/Patient+Empowerment+Home).
I'll also add my own blog posts -
A glimpse of how FHIR works, for people who’ve fought to get their data - a truly "lite" illustration of how FHIR can be used to request and receive information. (That's only one of the things it does, but this example peeks under the hood to see how it does it.)
A tale of two patients: the difference #FHIR hopes to make with free-flowing data: a compelling comparison of two patient stories. In one, the family (the Sheridans) exerted Herculean effort to amass data typed from PDFs into spreadsheets. In the other, he pulled all his data together from four hospitals using FHIR.
Dave deBronkart (Sep 16 2020 at 01:05):
Those interested in why FHIR is so important to patients may want to take time to read this ten part blog series, written around the DevDays event at Microsoft (Spring of 2019) where the Patient Empowerment WG was first proposed:
FHIR on the horizon: ten part blog series
It's the "origin story" of my own advocacy, the genesis of the movement motto "Gimme my DaM data" [Data About Me], and more.
That series has nothing to do with technology - it's a sociological and perhaps political explanation of why real patient autonomy and empowerment absolutely require full patient access to all their data.
Lloyd McKenzie (Sep 16 2020 at 02:04):
@David Hay's blog has typically contained the most intro-level content, though a few other blogs have had similar content. No blogs that are terribly active right now have really taken up that specific 'newby' mantel though.
René Spronk (Sep 16 2020 at 06:17):
Somehow the DevDays 2016 videos have disappeared. I'll try and get hold of David's FHIR Intro presentation he did during that devdays. Without wishing to be critical of other introductions (some of which are mine) his version contains the best blend of target audiences (technical, clinical) and subjects.
Rhea Campbell (Sep 17 2020 at 14:16):
Thank you all for the direction!
Dave deBronkart (Sep 17 2020 at 20:43):
@René Spronk please do let us know about the disappearing 2016 videos.
Lloyd McKenzie (Sep 17 2020 at 22:08):
@Rien Wertheim
Rien Wertheim (Sep 18 2020 at 06:15):
The 2016 aren't on the Youtube channel but on the devdays website: https://www.devdays.com/events/devdays-europe-2016/videos/
Vassil Peytchev (Sep 18 2020 at 13:15):
The direct link to David's Intro video is https://player.vimeo.com/video/191770214
René Spronk (Sep 18 2020 at 13:35):
(or, now that I've updated the access rights for that video): https://vimeo.com/191770214 .
René Spronk (Sep 18 2020 at 13:39):
Why do I like it? Well, it addresses both the technical as well as a clinical audience, and does so in a playful manner. It may be over 4 years old, but the basics of FHIR don't actually change that much. In the past I've challenged David to do a TED-like talk "FHIR for Clinicians" be he hasn't accepted as of yet. Yes, we'll need a "FHIR for Patients" as well, but it'll probably have to be one of the patient-empowerment-advocates to create and present such a thing.
Dave deBronkart (Sep 18 2020 at 17:15):
René Spronk said:
Yes, we'll need a "FHIR for Patients" as well, but it'll probably have to be one of the patient-empowerment-advocates to create and present such a thing.
LOL you think you can get away with saying that, without a response? Or were you dangling bait? :smile: That's what I've been asking for since my first trip to A'dam DevDays. :smile:
I'm happy to work on it but it needs a LOT more info & context than I have now. As I imagine you know, I already wrote the very simplest intro, [A glimpse of how FHIR works, for people who’ve fought to get their data}(https://www.epatientdave.com/2020/05/18/a-glimpse-of-how-fhir-works-for-people-whove-fought-to-get-their-data/). I'd be happy to work with someone on a bigger curriculum, but we may be better off creating a few short items that address specific questions or topics, then seeing how they fit into a bigger picture.
René Spronk (Sep 19 2020 at 08:43):
Of course my comment was meant to serve as bait ;-) I'm an educator, and something like the proposed TED talk is sorely missing for FHIR IMHO. As an educator I also know my limits, so although I could work with a patient-advocate to create something, they'd have to be in the lead and present it. It might be best if it were a story told by someone who has actually worked with FHIR as a patient, we've seen a few of those presenting at DevDays. That would add some pathos to the explanation..
Dave deBronkart (Sep 20 2020 at 13:46):
I'm of course happy to work on this sort of bridge-building project, and I'd love to have it happen here at least as a start. Maybe we could even have a session at DevDays, either officially or as one of the "pub crawl" venues if nothing else.
We need to think out what sort of audiences need this kind of introduction. The late Michael Morris of Curesoft was one category - a software developer making use of FHIR ("piped in" via 1upHealth) for his own personal needs. @John Keyes may be another example, though I don't know if he's been able to use FHIR yet for his needs. (John?)
Dave deBronkart (Sep 20 2020 at 13:46):
I've long been certain that elder care will be a potent use case - pulling together the data items needed for care coordination. But what do we tell them about FHIR at this point?? Is there any action they can take?
Dave deBronkart (Sep 20 2020 at 13:46):
For similar reasons I've also long envisioned a need for a sort of middleware (though I may be misusing that term) that would do the "FHIR works" of bringing data together for a particular user, from whatever sources they use, so the user can cobble together his/her own dashboard. I don't know enough yet about whether such a tool exists - is that what 1upHealth does? @Ricky Sahu ? Anyone?
René Spronk (Sep 20 2020 at 14:07):
Agree we need a clear 'what's in it for me' value proposition. And this being an 'infrastructural background standard' that's not that easy to describe to a patient-audience. What does this, or could this, enable, that was not possible before? In multiple countries we're seeing the trend (e.g. legislation) to put the patient into more control over their own data, but is that because of FHIR APIs, or (true in my opinion) are both the result of a wider set of changes in healthcare and society ? If we use a simplification like "Fax vs. FHIR" it'll be clear to all that the limitations of faxes aren't going to assist us too well in our goals of exchanging data between provider organizations, and with patients. To give you a variation on a English NHS title for a conference they had last year "BonFHIR of the Faxes" ;-)
As for the technical side of FHIR - the analogy with accessing web pages and links between them is one that should probably be used. Combine that with an explanation as to why structured data is generally better than unstructured data, and you'll effectively have explained FHIR.
To me the message will only work if we are able to pinpoint the societal root cause which leads to an ever increasing desire to exchange data between provider organizations, and with patients. That's the "Aha-moment" we'll probably need to have.
Jose Costa Teixeira (Sep 20 2020 at 16:23):
Just to add to the storm:
Perhaps next to the root cause, I think the aha moment can be on the future being close to us (and therefore more actionable). I explain:
One thing is to say "don't you want yourself and your caregivers to be able to access a curated view of the data" - we will all say yes, but most people may not see what is between us and that dream.
If we say
"It should be possible for your data to be shared among professionals, across institutions , across episodes, across countries and languages. FHIR provides a technical support for that amd allows data to be shared in a controlled manner, through a common vocabulary. We are now building our common grammar. Let governments push for it, let patients demand it, industry will adopt. Then a fancy scenario or one of the many demos, to make the dream more real
René Spronk (Sep 21 2020 at 06:32):
The problem with 'visions of the future' is that they are hard to relate to, people will listen and hear us predict things like 'flying cars'.
They're dreams of what might be.
I'd be a fan of sticking close to 'things that are currently possible' and 'multi year trends and how those project forward to the next few years'. Closer to 'that which will be in place 2 years from now (based on projectsons from the past)' rather than 'grand visions of the future'. But perhaps that's also what you suggested.
Jose Costa Teixeira (Sep 21 2020 at 07:27):
yes, not a wonderful future with no disease and world peace, but one that's actually close,.
Dave deBronkart (Sep 21 2020 at 14:44):
A quick note - yes, I think it's smart to point to "the adjacent possible," as some have called it.
Vision is important, but for kindling action, "adjacent possible" seems much more motivating. Consider the strong response in the Patient Empowerment stream to @Morgan Gleason's DevDays presentation: in the weeks following, people here quickly started discussing how they would "FHIR-ize" the letter she had sent to her provider.
Last updated: Apr 12 2022 at 19:14 UTC
