Stream: patient empowerment
Topic: Members needed to populate Patient Workgroup proposal!
Dave deBronkart (Jun 24 2019 at 03:23):
@Debi Willis has signed in as one of the two required interim co-chair volunteers.
For the five workgroup staffers, @Ryan Howells and I have started the ball rolling.
Who will join us?? I promise, this is gonna be fun and exciting :-)
Sign up here in the Google Doc proposal!
Lloyd McKenzie (Jun 24 2019 at 23:08):
@Dave deBronkart Are you registered as an HL7 voting member? If not, we can't use your name (though appreciate your enthusiasm :>) I've been in solid meetings for the last 4 days but tonight or tomorrow I expect to get an email off to a few of the key decision-makers at HL7 to let them know about our plans. As soon as I've got their feedback, I'll start beating the bushes across the community of existing members. I'm pretty sure we'll be able to fill the 5 slots pretty easily and hopefully we can rustle up another co-chair.
Dave deBronkart (Jun 25 2019 at 05:11):
No, not a member at all. I'm getting mixed messages from different people - someone (Grahame? Wayne?) said to sign up and they'll pursue matters about my membership separately, with no further information offered.
In short there is no way this non vendor civilian can reach into his pocket for the funds to be permitted to volunteer time he can't really spare, again :-)
Lloyd McKenzie (Jun 25 2019 at 05:24):
Understand. I'll chat w/ Wayne.
Virginia Lorenzi (Jul 05 2019 at 05:47):
I am in.
Virginia Lorenzi (Jul 05 2019 at 05:51):
What about Christina Carabella?
Dave deBronkart (Jul 23 2019 at 14:47):
Okay, folks, we're dead in the water here - since Seattle there's been a dearth of new volunteers. I've just upgraded(?) myself from WG member to co-chair (with @Debi Willis), and before we can move forward we need TWO additional members. @Virginia Lorenzi ? Anyone else?
Thanks to @Mikael Rinnetmäki and @Dave Hill for adding themselves as WG members. Y'all got any friends out there? :-) We surely want this group to have produced useful movement before Amsterdam ...
Debi Willis has signed in as one of the two required interim co-chair volunteers.
For the five workgroup staffers, Ryan Howells and I have started the ball rolling.
Who will join us?? I promise, this is gonna be fun and exciting :-)
Sign up here in the Google Doc proposal!
Lloyd McKenzie (Jul 23 2019 at 15:37):
@Dave deBronkart We're not really dead in the water. I haven't been beating the bushes looking for members because higher levels within HL7 are currently debating whether this new group should be a 'standard' work group or should be something 'special'. There's strong agreement that a group needs to exist and should be in place by the September WGM. The question is just what form it should take. The topic is expected to be discussed as part of the HL7 Board retreat this week. So I hope to have more insight by the end of next week. Once the direction is confirmed, we'll accelerate work on recruiting names - if that's what we need to do.
(For the record, I'm arguing that the Patient WG should be the same as any other and should not be a special entity.)
Lloyd McKenzie (Jul 23 2019 at 15:37):
Sorry for not keeping everyone better updated about the progress of the background discussions
Dave deBronkart (Jul 23 2019 at 16:22):
Sorry for not keeping everyone better updated about the progress of the background discussions
:-) I suspect that in reality one measure of the need for a group is whether people start hollering and volunteering :slight_smile:
What do I need to know about "September WGM"? Is it something I'm likely to want to attend? I see the event page but I'm asking about pragmatics / realistically speaking, given the usual funding questions.
Lloyd McKenzie (Jul 23 2019 at 17:13):
It would be good for you to attend one just so you can see how the organization works. WGMS are where tons of work gets done. It would also let you meet a bunch of folks who won't likely ever be at a Dev Days. This particular meeting is also likely where the new WG will get stood up and things like the mission and charter will be developed. (January will be in Sydney, so Atlanta is better from a cost perspective too.
Lloyd McKenzie (Jul 23 2019 at 17:14):
@Wayne Kubick I presume the speaker slate for Plenary is all tied up by this point?
John Moehrke (Jul 30 2019 at 18:51):
sorry to be late to signup. I was away at the IHE standards meeting. My current day-job is focused on the Patient Portal at the VA. My HL7 and IHE duties as patient privacy advocacy and security to enable that. I have been blogging on enabling patient privacy for over 10 years https://healthcaresecprivacy.blogspot.com/ . Lastly, I am a patient and HATE going to doctors... so I definitely have a patient advocacy perspective.
Virginia Lorenzi (Jul 31 2019 at 14:24):
@Dave deBronkart @Debi Willis I will help you with navigation. Also we need a meeting time. I am free Saturday night and would like to know other dates/time being thought of
Debi Willis (Jul 31 2019 at 15:00):
I am free Saturday night (September 14) also. All those going to the HL7 meeting that would like to discuss this topic more, would you like to meet up on Saturday after all the other HL7 meetings?
Lloyd McKenzie (Jul 31 2019 at 15:34):
The connectathon tends to run 'late' (e.g. 10pm sometimes), but we could probably do something after 7pm or so. Not sure if @Grahame Grieve has any meetings that night.
Grahame Grieve (Aug 01 2019 at 02:40):
not yet
Grahame Grieve (Aug 01 2019 at 02:40):
guess I do now ;-)
Lloyd McKenzie (Aug 01 2019 at 02:49):
7pm Saturday it is. We can either grab a table in the Connectathon room (it's normally emptied out some by then) or check with Mary Ann if there's a better place to squat.
Debi Willis (Aug 01 2019 at 12:40):
Perfect! Thanks
Dave deBronkart (Aug 01 2019 at 13:06):
If there's a chance we might already have some patient innovators there, would they likely be at the Connectathon, or is that a different kind of beast? I note that it's on day 1.
Lloyd McKenzie (Aug 01 2019 at 15:03):
Patient innovators could potentially show up anywhere, but if they're interested in writing code, the connectathon would be the best place for them
Dave deBronkart (Aug 01 2019 at 19:09):
Of course (i guess) ... has anyone articulated what will happen in a patient innovator track compared to everything else?
Bart Carlson (Aug 03 2019 at 19:36):
I would like to volunteer to be on the Patient Workgroup since I've been very involved during the past 3-4 years building a "Lifetime Clinical Records Platform" for Patients. I clicked on the link "Sign up here in the Google Doc proposal!", but did see a place to record my name, email and phone (e.g. Bart Carlson, bart.carlson@azuba.com and 630-416-4051). Any help would be most appreciated.
Lloyd McKenzie (Aug 03 2019 at 20:01):
@Bart Carlson are you a registered individual member of HL7 international or a voting member of a member organization or affiliate?
Lloyd McKenzie (Aug 03 2019 at 20:01):
(We welcome your participation regardless, but to be on the initial member list when proposing the work group, you need to be a registered member)
Dave deBronkart (Aug 03 2019 at 20:07):
@Lloyd McKenzie what is defined as "registered"? Does that equal "paid"?
Dave deBronkart (Aug 03 2019 at 20:11):
P.s. Hi @Bart Carlson ! How did you hear about this?
Lloyd McKenzie (Aug 03 2019 at 20:13):
For this purpose, yes registered pretty much = paid.
Bart Carlson (Aug 03 2019 at 21:40):
Yes, I'm currently a registered individual HL7 fully-paid up member.
Lloyd McKenzie (Aug 03 2019 at 21:49):
Awesome. You're added :) (The current draft is here: https://docs.google.com/document/d/1yUdlOp2E9ff_MNagPJYw5IH9i5wqZXZoWPF-7Sx09LE/edit#
Bart Carlson (Aug 03 2019 at 21:51):
I've been participating in the the Da Vinci workgroups (Clinical Data Exchange, Data Exchange for Quality Measures, Document Templates and Payer Rules, Payer Data Exchange and Prior Authorization Support) for several months. I'm also involved in several other groups outside of HL7 including:
- HIMSS: Currently Member Interoperability & HIE Committee and previously served on the Health Story Project; Standards Advisory & Technical Guidance for Interoperability WGs;
- Carequality: Currently Member of Implementers, Connected Agreement, Implementation Guide, Implementers, Push Notifications Policy, and Push Notifications Technical WGs;
- HRBA: Currently Member; and
- DirectTrust: Currently Serving on Patients and Payers WGs.
And, I previously served as a member on the original CMS Blue Button Committee.
Dave deBronkart (Aug 18 2019 at 16:08):
For completeness I'll note that Bart did get himself into the Google Doc. For future volunteers, the place to "sign up here" is at the heading HL7 Members who have agreed...
Debi Willis (Sep 05 2019 at 23:00):
Do we want to schedule this so anyone interested in the Patient group can attend?
Dave deBronkart (Sep 08 2019 at 15:33):
@Debi Willis what did you mean by "schedule" and "this"? Do you meaning publishing info about the 7 pm Saturday meeting?
Debi Willis (Sep 08 2019 at 22:44):
@Dave deBronkart @Grahame Grieve @Lloyd McKenzie @Wayne Kubick There hasn’t been any mention of the Patient Advocate meeting at the upcoming HL7 meeting in quite some time and I wanted to make sure that we are still on and have a place and time for people to meet.
Rien Wertheim (Sep 09 2019 at 14:16):
We (@Dave deBronkart and I) scheduled a breakout session at 5PM on Saturday to discuss the Patient Innovator Track at DevDays. Slightly different topic, but similar goal.
Virginia Lorenzi (Sep 11 2019 at 06:25):
Dave deBronkart Grahame Grieve Lloyd McKenzie Wayne Kubick There hasn’t been any mention of the Patient Advocate meeting at the upcoming HL7 meeting in quite some time and I wanted to make sure that we are still on and have a place and time for people to meet.
I would like to attend this - what's the plan?
Dave deBronkart (Sep 11 2019 at 13:02):
Yes, what's the plan? For that matter who's in charge of it?
Lloyd McKenzie (Sep 11 2019 at 14:25):
I feel like we're leaving you high and dry. Right now we've been pushing hard on a whole bunch of changes to IG publication leading up to training that starts today, so neither Grahame nor myself have put a whole lot of thought into this. Also, our bandwidth to meet during the regular meeting slots is going to be limited. What probably makes the most sense is to figure out who amongst this group wants to meet and when they have available and then we can see if we can get you a room for those timeslots.
Dave deBronkart (Sep 12 2019 at 07:04):
@Grahame Grieve see my PM
Dave deBronkart (Sep 14 2019 at 02:10):
What probably makes the most sense is to figure out who amongst this group wants to meet and when they have available and then we can see if we can get you a room for those timeslots.
@Virginia Lorenzi ? @Debi Willis ? @Abigail Watson ? Everyone on this stream - I'm looking at what to do in my time in Atlanta - we have nothing structured, right? (Thanks to Ginny for offering to help me navigate - all suggestions welcome)
Abbie Watson (Sep 14 2019 at 02:52):
Hi. Happy to help navigate. Symptomatic will be participating in the BlueButton and CCDA Implementationathon tracks. In patient speak, we’ll be testing that we can fetch claims data from Medicare and other BlueButton servers, and that we can fetch Nursing Notes and Physician’s Notes, Discharge Summaries, etc. Our NIH grant sponsor from Patient Insights will be attending as well.
Abbie Watson (Sep 14 2019 at 02:53):
Just landed in Atlanta. See you all tomorrow!
Dave deBronkart (Sep 14 2019 at 14:54):
We still have nothing structured, right? We have a proposed GOTI (Gathering Of The Interested :-)) at 7 pm today. Will anyone suggest something, or do I need to propose a nearby bar as the venue, with ad hoc agenda??
Grahame Grieve (Sep 14 2019 at 14:56):
I thought it was at 5pm?
Dave deBronkart (Sep 14 2019 at 14:58):
I thought it was at 5pm?
@Rien Wertheim and I are meeting at 5 to discuss the November Patient Innovator Track. The broader issue of a "Patient WTF" group was going to be discussed at 7 but no structure has come forth.
Grahame Grieve (Sep 14 2019 at 15:01):
ah ok
Debi Willis (Sep 14 2019 at 15:54):
Yes, the plan is to attend the 5 o’clock meeting today which focuses on patient innovators but also discuss where we will meet at 7 o’clock today to discuss the broader patient advocacy work group.
Dave deBronkart (Sep 14 2019 at 16:48):
Yes, the plan is to attend the 5 o’clock meeting today which focuses on patient innovators but also discuss where we will meet at 7 o’clock today to discuss the broader patient advocacy work group.
Now all we need is to find out from Rien where that will happen :slight_smile: :slight_smile:
btw, my lodging is a full apartment AirBnB around the block from the Marriott, so anytime we need a meeting venue with 16th floor view, balcony, and kitchen, ping me. That's how consumers roll :slight_smile:
Lloyd McKenzie (Sep 14 2019 at 18:41):
5pm meeting will be in M103
Lloyd McKenzie (Sep 14 2019 at 18:43):
I booked the same room for the 7pm meeting
Lloyd McKenzie (Sep 14 2019 at 18:44):
All of the M rooms are on the Marquis Level
Dave deBronkart (Sep 14 2019 at 18:44):
Thanks! Parenthesis the app doesn’t allow emoji
Lloyd McKenzie (Sep 15 2019 at 00:53):
Notes from this evening's session: https://docs.google.com/document/d/1POvILzma59e6RDpME5VmCJUXthTfVHX4tZS3-ACLkac/edit?usp=sharing
Lloyd McKenzie (Sep 15 2019 at 00:53):
Feel free to supplement
Lloyd McKenzie (Sep 15 2019 at 01:53):
And here's my notes from the 5pm session: https://docs.google.com/document/d/18SmRb0dwkDyN5RX-KgrQ-zR7zEabUFGKI2PVCWXUJbE
Lloyd McKenzie (Sep 15 2019 at 02:18):
@Virginia Lorenzi, based on feedback from Wayne, I think you're good to at least socialize the notion of the new WG with the steering division on Monday night. If you can get it on the agenda, that would be good. I doubt we'll have our ducks in a row to have the proposal ready to approve by then - and I expect the SD would want time to review it before approving anyhow. However, if you can get them to have a sense of comfort with it and identify any concerns we might need to address, that would help when the time comes to get the actual document through on a call.
Dave deBronkart (Sep 15 2019 at 03:12):
Let me know if I can help, of course
Lloyd McKenzie (Sep 15 2019 at 03:20):
I think it would be good if you joined Virginia. If you like, you can come sit in at the co-chairs dinner tomorrow night. They won't feed you, but you're welcome to come listen and you might find it informative. (Some of the information will get regurgitated in morning sessions on Tuesday, but not all, and none of the discussions.)
Virginia Lorenzi (Sep 15 2019 at 06:18):
sounds good.
Dave deBronkart (Sep 16 2019 at 22:14):
Here's a thought - should we mention it to the steering committee, as validation for the concept of listening to patients? https://www.bmj.com/campaign/patient-partnership
Dave deBronkart (Sep 16 2019 at 22:23):
In short, since 2014 The BMJ (one of the top medical journals in the world) has had a patient panel advising the editors. It works, and it's been expanded time after time.
So a question for HL7 is, if the editors of the BMJ (world class MDs) find genuine value in seeking comments and guidance from patients, can there be any chance HL7 would not, if we do it right?
Dave deBronkart (Sep 16 2019 at 22:25):
(I'm on that panel; we can arrange to talk to those editors if you want, because they are deeply interested in seeing this adopted in all corners of healthcare)
Lloyd McKenzie (Sep 16 2019 at 22:48):
If we're running into pushback, sure. But we shouldn't try to sell once the sale is made :)
Dave deBronkart (Sep 16 2019 at 23:05):
Of course - but it's still cool, without being a selling point. I mean seriously, this is cutting edge in health IT, but it's not insane and unprecedented
Mikael Rinnetmäki (Sep 17 2019 at 12:53):
Thanks for the notes @Lloyd McKenzie! I wasn't present, but made a suggestion to the purpose doc (assuming it'd turn out to be a living document).
Lloyd McKenzie (Sep 17 2019 at 12:55):
Absolutely. And others are welcome to provide their thoughts/suggestions too.
Last updated: Apr 12 2022 at 19:14 UTC
