Stream: patient empowerment
Topic: Explaining how specs are relevant for patients
Josh Mandel (Jun 03 2021 at 20:47):
I know there's ongoing interest in explaining what interop specs mean for consumers. I wanted to share an example from the SMART Health Cards project, as we started work recently on a consumer-facing landing page that tries to explain what the Health Cards spec is all about. I'll note this has been an illuminating exercise --- it's challenging to be detailed and accurate while staying non-technical and using plain language; it's also hard to explain a spec "in the abstract" when in real life a lot of details depend on implementation-specific choices.
Andrea Downing (Jun 03 2021 at 21:06):
Josh Mandel said:
I know there's ongoing interest in explaining what interop specs mean for consumers. I wanted to share an example from the SMART Health Cards project, as we started work recently on a consumer-facing landing page that tries to explain what the Health Cards spec is all about. I'll note this has been an illuminating exercise --- it's challenging to be detailed and accurate while staying non-technical and using plain language; it's also hard to explain a spec "in the abstract" when in real life a lot of details depend on implementation-specific choices.
Thank you Josh! As a BRCA Advocate / Nerd resources like this are going to be hugely important. In many communities I find that there is usually only a small subset of those who can engage on the technical side - most patients don't even know what an API is. In order to bridge the gap and build trust we have tons of work to do at a grassroots level in our communities.
Andrea Downing (Jun 03 2021 at 21:11):
I also find that communicating precise technical concepts "plain English" is one of the hardest skills to master. One of my and @Dave deBronkart 's dear friends Might Casey literally has a QR code on her chest to make a statement about getting her own as an ePatient ( : Reminds me of this...how things come full circle.
casey.jpg
Dave deBronkart (Jun 04 2021 at 16:24):
Yes ma'am, just a couple of weeks ago Casey's tattoo came up here. https://chat.fhir.org/#narrow/stream/179262-patient-empowerment/topic/Micro.20QR.20Code.20Tattoos/near/239361901
Andrea Downing (Jun 04 2021 at 16:46):
@Abbie Watson nice to meet you and saw your other thread on QR codes - we should introduce you to our friend Casey at some point... :up:
Debi Willis (Jun 07 2021 at 21:02):
Andrea Downing
We have a new subgroup in the Patient Empowerment Workgroup that is just starting up. It is called "Consumer Outreach". This is one of the focuses of that group....bridge the gap at a grassroot level. @Dave deBronkart is not only a co-chair of the Patient Empowerment Workgroup, but I believe he is also participating in this new subgroup. We would love to have you join that group!
Andrea Downing (Jun 08 2021 at 04:42):
Thanks @Debi Willis happy to join. I have limited bandwidth these days but will contribute where I can. DM me details :+1:
Dave deBronkart (Jun 09 2021 at 10:57):
I will respond off-list. The big question is what one can contribute with limited bandwidth these days! :smile:
Virginia Lorenzi (Jun 12 2021 at 21:39):
@Josh Mandel Note that one effort on the Patient Empowerment worklist in to provide a Patient-facing intro to FHIR for R5.
Dave deBronkart (Jun 23 2021 at 02:39):
Virginia Lorenzi said:
Josh Mandel Note that one effort on the Patient Empowerment worklist in to provide a Patient-facing intro to FHIR for R5.
This may be my most substantial project of interest in the coming year - not to author it but to contribute to whether it's human-friendly, perhaps by providing some analogies and examples.
@Virginia Lorenzi while I think of it, the recent discussion about vocabulary in our WG should be brought forward into that project. Is there anyplace we can start dumping notes for it? A Confluence page or other?
It needs a curator, OMG please. Someone sane and organized, help please. This won't be a ton of work for now - it just needs an organizer.
Last updated: Apr 12 2022 at 19:14 UTC
