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Chair today:  Virginia Lorenzi 

Scribe today:  Kimberly Herman 

Attendance has been moved to the bottom.  


Agenda Item


Opening & Admin

5 min

Welcome any newcomers 

  • Thank you for joining us!

  • Visit our NEWCOMERS page: Welcome Newcomers! It explains how to sign up to Confluence, our listserv, and the Zulip FHIR chat platform, and how our group works. 

  • We ask attendees to use their full names and include their company name (or N/A or advocate).  This will help avoid zoom bombers and help us with attendance and balanced voting.
Standing announce-mentsAntitrust Reminder

Professional Associations that bring together competing entities, such as HL7, are subject to strict scrutiny under applicable antitrust laws. HL7 recognizes that the antitrust laws were enacted to promote fairness in competition and, as such, supports laws against monopoly and restraints of trade and their enforcement. Each individual participating in HL7 activities, regardless of venue, is responsible for knowing the contents of and adhering to the HL7 Antitrust policy as stated in §05.01 of the Governance and Operations Manual (GOM). 

Ensure Zoom is recording

Note our WG's recording policy:

Patient Empowerment WG’s policy is to record many of its weekly calls and virtual working group sessions to help with minute taking.  If a recording will also be published, the participants will be asked in advance if that is OK.  

Zoom announces when recording is started.  Any participant can also ask the group or the co-chairs that we stop or pause recording in a specific meeting, and recording will be stopped or paused as requested.

Approval of Minutes

3/2 minutes to be approved - includes mission and charter.  

(Our protocol: "The minutes have been posted on Confluence. Are there any corrections to the minutes? (pause) Hearing none, if there are no objections, the minutes are approved," )

  • 3/2 minutes approved.
5 minUpcoming Events

IHE Connectathon feedback - none.

USCDI V4 Comments period is open.

HIMSS - HIMSS Global Health Conference & Exhibition | HIMSS

  •       MITRE (Tina) - presenting a listening session.  
  •       Maria - presenting at the Symposium (pre-conf), and attending as well
  •       Attending - Rita, Jan. Kim (Tuesday only)

May WGM and Connectathon

WEDI Patient Experience Virtual Event, April 2023

About Us - Workgroup for Electronic Data Interchange (WEDI)

4 minADI 
Block Vote 6:

Link to the ADI STU-1 Block Vote 6 Jira tickets:

jqlQueryproject = "FHIR Specification Feedback" AND Specification = "US PACIO Advance Directive Interoperability (FHIR) [FHIR-us-pacio-adi]" AND (Grouping = Block-Vote-6 ) ORDER BY key ASC

Brian moved to accept.  Dave Hill second.  11 affirm, 0 abstaiin, 0 against.

Maria - note to double check that that we've fully swapped the value set to conform to the VSAC value sets.

5 minMission and Charter Updates

Proposed Mission Statement:

The Patient Empowerment Work Group was formed to identify and define requirements for standards that enable individuals and caregivers to identify their personal needs, requirements and preferences for health information data exchange and accessibility. 


Our mission is to represent, accommodate, and empower individuals and patients in HL7’s standards work to guide the design of a more inclusive healthcare system that serves the people it is intended to serve with HL7 standards as the mechanism for doing so.

Proposed Charter Statement:

This Work Group provides a forum for all interested parties who want to promote a person’s right to be represented when standards are developed to access, update, and exchange their health information whether for their own use or for transfer to other entities. 


The recipients of care inevitably have a different perspective than those creating and working in the healthcare system, and that perspective needs to be included by direct participation of patients and caregivers in the HL7 standards process.


The focus of this group will be on the information content, secure and permitted access, and accuracy of people’s health information with an over-arching agreement that the subject’s health and device-initiated information needs to be permitted to be eligible for exchange of as the world becomes more and more inter-connected.


The WG will also work with and provide guidance and recommendations to other WGs that should be ensuring people can access, update, and be stewards of their own health information.

View file
namePatient Empowerment MissionandCharter_updates 2023 v3.pptx

Maria motioned to accept the Proposed Mission statement and Proposed Charter statement.  Jan seconded.  Passed 7 (for) 0 (against) 0 (abstain).  We still need to draft and approve the relationship statements.  Gora clarified that formal relationships have to do with having SOUs so we do not have formal relationships, but we do have informal relationships internally and externally (for example PACIO) - our issue is we have many and want more.  Drafts of relationship statements will be created for next week's review.

5 minProject Updates

Patient Contributed Data  (meets 10AM ET Wednesdays).

(no other project updates - deferred to Lloyd)

10 minPhysical Activity FHIR IG status and guide reviewLloyd McKenzie reviewed the guide and noting they are preparing for their first ballot.  Noted they are interested in Patient Empowerment member feedback.  There was an interest in overlap or relation to, PACIO and Personal Function Functioning and Engagement, the PCHD white paper (Jan asked that a reference from the IG to the whitepaper be added, and the SPHR project.  Lloyd noted that some gyms are involved.
0 min - not on todays agendaCo-sponsored projects

There was not time - not covered

International Patient Access (Wednesday 10AM ET) 

Problem Oriented Health Record (Monday 3pm ET) 

Personal Functioning and Engagement

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Attendance ( )

From Zoom's attendance data:

Name (Original Name)Present
Virginia Lorenzi (NYP)x
Abigail Watson  (MITRE)
Dave deBronkartx
Debi Willis (myPatientLinks)
Maria Moen (MyDirectives/ADVault, Inc.)x
Britt Massei
Corey Spears 
Danielle Sill
Jan Oldenburg  x
Jay Gauthier
Jessica Skopac (Mitre)x
John Keyes
Lincoln Weed
Michael Mittelman
Natasha Kreisle
Rachel Richesson
Rita Torkzadeh (Aegis)x
Ryan Harrison
Tina Wilkins (MITRE)x
Lynda Hoeksema (MITRE)
Andrea Downing
Grace Cordovano
Matt Elrod (maxMD)
Dave Hill (Mitre)x
Tamara Brantley
Stanley Nachimson
Tammy Hamrick
Kim Herman (Epic)
Nancy Lush

Bart Carlson
Mikael Rinnetmaki
Juhan Sonin
Karen Georges-Ransom (NYP) 
Patricia Falto (NYP)x
Vicki Giatzikis (NYP)
Jeff Danford (Optum)
Marjorie Behm (LEAP for health)x

Christopher Wean (Epic)

Shaumik Ashraf (Mitre)
Neelima Karipineni (MITRE)

Jason Kulatunga 
Joe Quinn (Smile Digital Health)
Brian Meshell (MITRE)x
Lloyd McKenziex