Stream: patient empowerment
Topic: ux of consent
Tom Jones (Apr 23 2020 at 17:25):
ux of a consent for one ehr to pass patient data to another ehr seems to be missing. Does anyone have any pointers to what sort of data exchange event would cause a ux that required user consent. Or is the assumption that all user consent occurs in the real world and not in the digital world?
Jose Costa Teixeira (Apr 23 2020 at 17:43):
missing from where?
Tom Jones (Apr 23 2020 at 18:45):
missing as in non-existent. If you have a reference please share it. Remember it it the patient UX that i am asking about.
Jose Costa Teixeira (Apr 23 2020 at 18:48):
I don't understand the question. But perhaps it's because I don't really care for the patient's consent.
Jose Costa Teixeira (Apr 23 2020 at 18:49):
Any data exchange needs to have a permission. Consent is one way to get that permission. But I do not see the link to UX.
Jose Costa Teixeira (Apr 23 2020 at 18:49):
(except in general, consent fatigue is one fine way to harm a good UX IMO)
Tom Jones (Apr 23 2020 at 18:57):
Right - i can't find anyone that really cares about consent obtained digitally from the patient. Somehow i thought a chat on patient empowerment might be a good place to look. (BTW I fully agree that cognitive overload must be avoided.)
Jose Costa Teixeira (Apr 23 2020 at 19:06):
there is a consent resource
Jose Costa Teixeira (Apr 23 2020 at 19:06):
and I think that people care (more than i do, hence my disclaimer)
Lloyd McKenzie (Apr 23 2020 at 20:50):
FHIR doesn't define user interfaces at all. FHIR is focused on what the data looks like when going from system to system. So from FHIR's perspective, there will be some sort of client (web app, mobile app, desktop app, transcribed form) that will capture information. That information will then be organized into a standard 'FHIR' syntax according to the Consent resource and passed off to whatever system might need it. The only place where UX sort of comes into play with FHIR is with the Questionnaire resource. Questionnaire allows you to define arbitrary sets of questions along with rules for order of entry, allowed responses, conditions between questions, etc. FHIR defines rules for defining questionnaires, but isn't going to standardize the questionnaires used for any particular purpose.
Grahame Grieve (Apr 24 2020 at 03:26):
I don't think that this is the whole answer. In fact, it's not
Grahame Grieve (Apr 24 2020 at 03:27):
we don't care about UI. UX on the other hand, is a big deal , and we're quite interested in the UX of consent as a whole
Grahame Grieve (Apr 24 2020 at 03:27):
and I think it's worth having that dsicussion here
Brendan Keeler (Apr 24 2020 at 05:56):
There's clearly no UI because it's all on the blockchain already
Grahame Grieve (Apr 24 2020 at 06:00):
that sounds more like a way to ensure that there's no UX
John Moehrke (Apr 24 2020 at 14:38):
Let me try to parse the request... Are you asking -- Is there a way that when data is communicated from one organization to another organization that the first organization can require the second organization get an explicit consent before they use the data?
John Moehrke (Apr 24 2020 at 14:38):
I wrote that use-case as a PUSH of data from one organization to another organization.
John Moehrke (Apr 24 2020 at 14:39):
There is another use-case where an organization wanting to receive data from a custodian, is told that they must get explicit consent prior to that data being given...
John Moehrke (Apr 24 2020 at 14:40):
Both of these are supported, although not well explained as the explanation would need to appear in an Implementation Guide, and the motivation to write that Implementation Guide and the resources and reviewers to make it understandable have not come forward.
John Moehrke (Apr 24 2020 at 14:41):
Both of these are cases that Patient Empowerment might be interested in developing
John Moehrke (Apr 24 2020 at 14:42):
The Patient Empowerment workgroup is the right place for Patient User Experience.... Not to create a strict standard on how a User Interface would exist, but in driving for interoperability standards (e.g. Implementation Guides) that can be used to achieve the conditions for a good patient user experience.
Dave deBronkart (Apr 24 2020 at 14:51):
I apologize for being late to this thread. As a co-chair of the Pt Empowerment WG (along with @Debi Willis and @Virginia Lorenzi) it's sorta my responsibility. Thanks to WG participants @John Moehrke and @Lloyd McKenzie for representing.
I too wonder if we have some blurring between UI and UX. I'm new to HL as of September but I've heard repeatedly that FHIR is purely a data standard, with literally no UI, any more than HTTP has a UI (for the end user, the browsing human). If I have that wrong to ANY extent I hope someone will correct me, because I intend to become precise.
If we're then left with discussing UX, we come to the question of which user? The patient? In that case UX=PX. Or is the question about the IT people at the pulling end, the pushing end, the pulled-to end, the pushed-to end?
Dave deBronkart (Apr 24 2020 at 14:53):
On a related note, here is the Patient Empowerment WG's home page on Confluence, which includes this:
Mission
The Patient Empowerment Work Group promotes and amplifies the viewpoint of patients and their caregivers in HL7’s standards work, in support of the HL7 mission.
Tom Jones (Apr 24 2020 at 16:04):
Does this mean that patient (or guardian) use cases are within the scope?
John Moehrke (Apr 24 2020 at 16:06):
I certainly expect that guardian (and other various terms similar) are inscope of the patient empowerment. (It certainly is in the case of all the work HL7 has done on Consent).
Tom Jones (Apr 24 2020 at 16:06):
Is there any work that discusses the patient ux for consent?
Dave deBronkart (Apr 24 2020 at 16:14):
Tom Jones said:
Does this mean that patient (or guardian) use cases are within the scope?
Tom, if I'm using this platform correctly, it looks like you're even newer here than I am :-) Are you also new to HL7, like me?
It may be useful to read the workgroup's home page to understand the group's focus - it'll only take a couple of minutes.
I've learned that after a workgroup drafts its mission & charter and gets them approved by HL7, the next task is to choose some priorities to focus on. And like much of HL7, I've learned, that's largely driven by what's important to the people doing the work - a mechanism that ensures that the people doing the work are motivated to do it. :-)
My instincts suggest that we'd be able to more usefully answer your scope question if you can offer a specific example of what you have in mind.
Dave deBronkart (Apr 24 2020 at 16:16):
Also, by "is there any work" are you talking about HL7, or anywhere out there?
Tom Jones (Apr 24 2020 at 16:20):
i asked if use cases are appropriate - that would be a contribute i could make - but i did not get an answer. (I did see them mentioned on the home page, but my question is about what is appropriate at this time.)
Tom Jones (Apr 24 2020 at 16:30):
here, as an example, is a use case on one of the Kantara web sites: https://wiki.idesg.org/wiki/index.php/FHIR_Use_Case
Dave deBronkart (Apr 24 2020 at 16:39):
Tom Jones said:
here, as an example, is a use case on one of the Kantara web sites: https://wiki.idesg.org/wiki/index.php/FHIR_Use_Case
This looks interesting! I'll tag our project leads who do code (I don't) to see if it would be useful for one of our projects.
@Abigail Watson @Lisa Nelson @Jan Oldenburg @Maria D Moen @John Moehrke @Debi Willis @Mikael Rinnetmäki
John Moehrke (Apr 24 2020 at 17:14):
Tom Jones said:
here, as an example, is a use case on one of the Kantara web sites: https://wiki.idesg.org/wiki/index.php/FHIR_Use_Case
if this is a use-case being worked on by Kantara, then what is the expectation of HL7? If this is intended by Kantara to be a joint project, then we need to get that clear. If this is intellectual property of kantara, then HL7 can't just use it.
that said, we have worked on similar use-cases, and as I mentioned above there are mechanisms in the FHIR specification intended to be used for these kind of use-cases.
Mikael Rinnetmäki (Apr 24 2020 at 17:31):
@Tom Jones we have some screen shots available at https://www.sensotrend.com/connect.html for a use case that combines the use of HL7 FHIR Consent resource and Kantara Consent receipt, if you find that interesting. I'm working on getting a live demo online some time in the future. Let me know if you're interested and I can ping you when it's live.
Mikael Rinnetmäki (Apr 24 2020 at 17:32):
Again, of course this is something we've just built using the specifications from HL7 and kantara. If you're asking for the UX to be standardized, that's another question. I'd be interested in being involved in those discussions too.
John Moehrke (Apr 24 2020 at 17:37):
YEAH for kantara consent receipts... would love to see that. Would love for it to be available somewhere that we (HL7 FHIR) can point at.
Mikael Rinnetmäki (Apr 24 2020 at 17:43):
Do you mean the Kantara consent receipt spec being available, or Sensotrend's implementation?
Bart Carlson (Apr 24 2020 at 20:30):
Please add me to your demo list. I would love to see what you've done.
Tom Jones (Apr 24 2020 at 22:04):
there is a joint venture between Kantara isi and hyperlegder indy to create consent receipts for medical research trials
Last updated: Apr 12 2022 at 19:14 UTC
