Stream: patient empowerment
Topic: Possible letter to PAC on Knight findings
Dave deBronkart (Oct 23 2021 at 13:18):
This is a fork from the "Thursday Topic" thread, which has spawned a draft of a proposed letter.
Ryan Harrison said:
Andrea Downing Lloyd McKenzie Josh Mandel Brent Zenobia Dave deBronkart John Moehrke
v2 of the letter. There are comments in the docx for the suggestions from Josh, Brent, Lloyd, et al. contributed. Do double check your intent is captured.
@Lloyd McKenzie @Keith Boone @Virginia Lorenzi anyone: is there any formal process for creation of a letter "from" a workgroup to PAC?? This is the first time I (a virgin co-chair) have been in such a situation. (The same is not necessarily true of co-chairs Virginia Lorenzi (HL7 board member), Debi Willis, Abigail Watson.)
I (speaking for myself) welcome @Ryan Harrison's contribution here: we (the WG co-chairs, I'm confident to say) are always eager to have people participate and do the work. At the same time, it seems like a leap to conclude with no formal process that "The Patient Empowerment Working Group is deeply concerned ... We are mad about..."
This Zulip note is not saying I agree or disagree with anything in Ryan's draft. This is a question about HL7 process. My content suggestions are in the next message.
(Continued)
Dave deBronkart (Oct 23 2021 at 13:34):
@Lloyd McKenzie @John Moehrke @Virginia Lorenzi and other senior HL7 gurus: is there a formal or recommended HL7 process for developing such a letter to PAC?
@Ryan Harrison I worry that the draft, viewed in isolation, looks like an already-in-process artifact from the WG, so I suggest tweaks at the very top:
- Make clear at top that this is a draft you undertook on your own. Again, this is for clarity for readers who encounter this without context.
- Where you name the Knight report, include the subtitle, which hones the focus to "API implementations"
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Ryan Harrison (Oct 23 2021 at 16:58):
@Dave deBronkart
Where does the PE WG usually collaborate on documents?
Do you have a collaborative document space for the PE working group (e.g. Google Drive (gDrive), Teams, Dropbox)? Where should the working version of the document be stored?
For v1, I authored in Libre Office, and posted to FHIR Chat
For v2, @Andrea Downing used her personal gDrive, and I posted a version to FHIR Chat.
Requested Edits
Done in Andrea's gDoc.
Ryan Harrison (Oct 23 2021 at 17:08):
@Dave deBronkart
Process
Dave deBronkart ...it seems like a leap to conclude with no formal process that "The Patient Empowerment Working Group is deeply concerned ... We are mad about..."
To my mind, this wouldn't go out (to PAC) unless approved by the PE WG. I suggested the meeting of 28 Oct (but obviously this is the chair's decision).
Ryan: Discuss and approve (or not) at 28 Oct WG meeting. Done and move on.
Much of the specific language was pulled from this chat. For example, "we are mad about" is from @John Moehrke, with positive reactions from @Andrea Downing and @Josh Mandel Source.
Lloyd McKenzie (Oct 23 2021 at 17:25):
Typically PAC solicits feedback on proposed regulations. Initiating communication to government outside that context is quite unusual and probably doesn't have a formal process. So just write what you'd like to say, agree on the key points as a WG and toss it to PAC. In the end, it will likely be a message conveyed "by HL7" rather than by the PE Workgroup.
Dave deBronkart (Oct 24 2021 at 02:57):
I just want to note that most members of the WG (including at least 2 of the co-chairs) have no idea this is going on, so if anyone thinks this discussion constitutes an acknowledge activity "of the WG", they're probably in the minority. :smile:
I'm not complaining! I love the engagement and activism. I'm just pointing out something everyone involved needs to be aware of before thinking something specific is happening. (Hence my suggestion that @Ryan Harrison make this clear at top.)
p.s. I'm out of pocket this week due to my wife's Tuesday surgery so I won't be present in the Thursday meeting.
Dave deBronkart (Oct 24 2021 at 03:01):
Ryan Harrison said:
Dave deBronkart
Where does the PE WG usually collaborate on documents?
Do you have a collaborative document space for the PE working group (e.g. Google Drive (gDrive), Teams, Dropbox)?
No. Nothing like this has ever arisen in our young WG. Individual projects do what works for them.
What SHOULD we do? What do other happy / effective WGs do?
I would think, though, that it would make sense for the draft document to be at some URL people know about, e.g. in this case Andrea's GDoc. Did I miss a link?
Lloyd McKenzie (Oct 24 2021 at 15:07):
Typically content is authored either via a Google doc or on Confluence. (Different folks can have barriers to using one or the other.)
John Moehrke (Oct 25 2021 at 12:02):
something like this, being ahead of the PAC, can just be an email from the co-chairs. Just indicating the concerning areas that the Patients group has given the report. Up from that I prefer confluence. Google documents work better than office, but are less obvious what is the maintenance and provenance of them.
Ryan Harrison (Oct 25 2021 at 21:58):
@Lloyd McKenzie @Dave deBronkart @John Moehrke
gDoc
Edits and suggestions are in @Andrea Downing 's gDoc: https://docs.google.com/document/d/1G6_3QfZRI6XPhLhtffVlHtDke5JBLP1nyhg1nJFMNDk/edit#
For editing/suggesting, please request access.
For read-only, we're publishing incremental snapshots (v1, v2, v3 to be released tonight) on the #patient empowerment stream.
Confluence
After the co-chairs post the agenda, the document link and latest snapshot will be posted to Confluence.
Andrea Downing (Oct 25 2021 at 22:21):
@Lloyd McKenzie @John Moehrke @Brent Zenobia @Dave deBronkart @Keith Boone @Virginia Lorenzi
v3 of the letter, following review w/ Virginia today.
2021-10-25-HL7-Patient-Empowerment-WG-meeting-DRAFT-proposed-response-to-Playing-with-FHIR-v3.pdf 2021-10-25-HL7-Patient-Empowerment-WG-meeting-DRAFT-proposed-response-to-Playing-with-FHIR_v3.docx
Andrea Downing (Oct 29 2021 at 17:51):
Following our PE WG meeting, waiting for any final comments on the last version of our letter before we review for a vote next week. @Ryan Harrison @Lloyd McKenzie @John Moehrke @Dave deBronkart @Keith Boone @Abbie Watson @Virginia Lorenzi. @Ryan Harrison and I added those of you to the google doc who requested to be added. Will send out update early next week. Thx!
Andrea Downing (Nov 04 2021 at 18:39):
HI @Virginia Lorenzi @Ryan Harrison @Abbie Watson @Dave deBronkart @Keith Boone @Grahame Grieve @John Moehrke @Josh Mandel @Lloyd McKenzie
Here is the updated letter to PAC from PE WG. We cleared out comments today up to recommendation #2. Next week we'll pick this up at recommendation #2 onward.
2021-10-25-HL7-Patient-Empowerment-WG-meeting-DRAFT-proposed-response-to-Playing-with-FHIR-v4.docx
2021-10-25-HL7-Patient-Empowerment-WG-meeting-DRAFT-proposed-response-to-Playing-with-FHIR-v4.pdf
Isaac Vetter (Nov 30 2021 at 19:31):
Are you folks familiar with:
- EHNAC's TDRAAP program? TDRAAP-Basic comes close to the certification you're asking CMS to consider creating.
- You should understand this: https://carequality.org/wp-content/uploads/2020/12/Carequality-Consumer-Facing-App-Certification-Profile.pdf. It's a specification that was re-used to create the so-called SMART Privacy Manifest concept as defined here: https://www.ftc.gov/system/files/documents/public_events/1548288/privacycon-2020-kenneth_mandl.pdf
Josh Mandel (Nov 30 2021 at 19:40):
(I'm not entirely sure what you mean about "re-used" in that last bullet point. I'm not aware of a direct lineage, but both might be seen to build on 2016 work at https://github.com/HHSIDEAlab/poet)
Virginia Lorenzi (Dec 03 2021 at 04:57):
@Ryan Harrison @Andrea Downing note Isaac's suggestion
Last updated: Apr 12 2022 at 19:14 UTC
