Date: Monday 24 May 2021

Quarter/Slot: 

Q1: 9:00 am - 10:30 am UTC 

Q2: 11:00 am - 12:30 pm UTC

All Participants: Make sure you are registered with WHOVA and join the session through that.

Please note that HTA members are requested to join the joint meeting with Vocab WG on Wednesday 26th May Q2 and Q3

Attendee type:

H - HTA Member

O - observer

L - liaison

Attendance:

P - present

A - Apologies


Name

Affiliation

HPJulie JamesBlue Wave Informatics LLP
HP

Roel Barelds

Precipius

HPSusan MatneyIntermountain Health
HPSylvia ThunHL7 Germany
HPCarol MacumberApelon Inc.
HPReuben DanielsSaludax
HPDavera GabrielJohns Hopkins University Institute for Clinical and Translational Research
L

Wayne Kubick

HL7 (CTO)

L
Suzy RoySNOMED International
L
Swapna AbhyankarLOINC
O
Rob McClureMD Partners
OPAndrea MacLeanInfoway
O
Joan HarperInfoway
O
Jessica BotaApelon
O
Alberto LlanesFederal Electronic Health Record Modernization FEHRM
OPLisa NelsonMaxMD
OPMatt ElrodMaxMD
OPMary Kay McDanielCognoscenti
OPRachel RichessonPatient Empowerment WG / University of Michigan
)PGenny LuensmanCDC/NIOSH (National Institute for Occupational Safety and Health)

POlga VovkSamvit Solutions LLC








Minutes Approved as Presented 

Minutes of the last WGM Meeting were approved on the HTA following the WGM Teleconference 2021-02-03

Discussion items

Please note: order of items may change due to availability/practicality

TimeItemWhoNotes
ManagementAgenda approvalJulie

RB moves, RD seconds - motion passes 5-0-0

ManagementMinutes approvalJulie

From the last TC (2021-05-12)

Minutes to be accepted RB, seconded RD, passes 4:0:0

TopicExternal Code Systems UpdateJulie

WHO including ICD-11

Sylvie's and Carol's update from Robert Jacob:

http://id.who.int/icd/entity/619527855 - canonical URI ICF (International Classification for Function and Rehabilitation) - used in patient related outcomes etc.

https://icd.who.int/en/docs/icd11-license.pdf - this is the new license - a common goods license

WHO will be working with FHIR.  They have had a meeting with GG - both classification and eHealth areas in WHO https://icd.who.int/icdapi

This is going to be "publicised" - probably today by WHO themselves (and maybe with HL7 for the FHIR part)

ICD11 is considerably bigger than ICD10 (100,000 to 12,000 concepts) with a large number of experts working in particular clinical areas (e.g. psychiatry and lymphomas) and the use case has shifted from morbidity and mortality towards use in EHRs

Is there any possibility to have a conversation with WHO about how to get major international terminologies to work together for the common good?  We also need to make sure the technical parts are correct....e.g. for URI (and so direct conversations with GG).  This level of conversation between "HL7" and "WHO" on "terminology" should have some involvement of the HTA in some way or another....and this should be something for the new TSG to consider.

International Classification of Diseases 11th Revision

From Roel: Regarding ICPC. I tried to get information through the Dutch department who is responsible for the use of ICPC in the Netherlands (Tjeerd van Althuis ). Unfortunately they are not working together with WONCA. So now I've contacted Thomas Kühlein from WONCA. Haven't heard from him yet. Sylvia, by any chance, do you know him?

SNOMED CT SOU

http://www.hl7.org/portal/index.cfm

Points to be raised in an email to Wayne:

1.2 Liaison: We understand that the current HL7 liaison is Wayne and that necessarily the liaison does need to be someone from "HL7 staff" although working in close co-operation with the HTA.  However, for the future we suggest that it will make sense for this role to transition to a service provided from the Terminology Services Group.

5.1 Joint Work Product: SNOMED on FHIR is clearly a joint collaborative work and (we understand) is under joint copyright.  Has anyone considered "Using SNOMED in FHIR" which is part of FHIR core?

Appendix 1

Section 1 - needs updating, especially since GPS is now a reality, especially Part d, 
Part a mentions HL7 Affiliates that are SNOMED non-members and the SNOMED Development License; is this statement enough clarification for non-member countries to understand their position, especially with respect to what the Development License actually means?

Section 2 - remove Part a - nobody does this; we do not have the bandwidth!

Section 3 - is this being done other than in SNOMED on FHIR?  And is it being done in the way currently stated? Again, a possible service for the new TSG

Section 4 - given that most folk now use UTG and THO and FHIR core, we suggest that this Portal be retired.  Having so many places for these things is just confusing.

Sections 5-7 are reasonably generic and so have little change other than a discontinuing the Portal

CARIN/Blue Button IG Issues

Lisa N: IG has chapter on terminology license guidance http://hl7.org/fhir/us/carin-bb/Terminology_Licensure.html

There is confusion amongst third-party app providers in terms of what is provided to users from coded information because the payers say that their license prevents them from sharing the display name of coded data to third parties.  Whilst we (the HTA) understand the issues and the pain that they cause, these are legal and political issues rather than terminology issues.

HTA has worked very hard with the project to make sure that licence and copyright information is available and correct, for all the code systems that have been mandated for use by the US authorities.  So, from the HL7/HTA perspective, we have been clear: this is the advice we have to give: "Licensee alone is responsible for identifying and obtaining any necessary licenses or authorizations to utilize Third Party IP in connection with the Materials or otherwise."

Mary Kay: code system provider organisations have been involved in discussions over months, so organisations are aware of the issues but have as yet, not come to resolution.

Carol: the literal reading of the CMS rule does not explicitly state use of human readable display names for codes.  As a patient, the data (including the display names) can be viewed on the payer's portal

From the CMS final rule "Enabling patients to access their health information electronically without special effort by requiring the payers subject to this final rule to make data available through an application programming interface (API) to which third-party software applications connect to make data available to patients for their personal use."

"Payers: Implementing requirements to ensure that payers (that is, entities and organizations that pay for health care), such as payers in Medicare Advantage, Medicaid, and CHIP, make enrollee electronic health information held by the payer available through an API such that, with use of software expected to be developed by payers and third parties, the information becomes easily accessible to the enrollee and data flow seamlessly with the enrollee as such enrollees change health care and social service providers and payers."

Because these are legal and political issues, they are not something that the HTA can address beyond providing the guidance that we have done.  The CARIN project needs to address this as a project directly itself, possibly in collaboration with Da Vinci.  Rob McClure (HTA Liaison to USRCS) Is this something that US Realm can help with (possibly in tandem with the Patient Empowerment WG)?

TopicConvenience Copies of External Code SystemsCarol

Poster child: (CDC ODH) ODH as a code system is owned by NIOSH - arose from the VA's Military Service Record project.

What if any recommendations can we make about HL7 having a "convenience copy" of a code system (in THO).  VSAC - CMS value set repository.  But since ODH is not CMS-required, VSAC/NLM declined to include it.

Currently THO (a "repository of resources") only has convenience copies of code systems are present at the express desire and request of the owner (usually supported with an SOU) - and the only one in existence is SNODENT from ADT.  We currently have no maintenance process through UTG (etc.) so any agreement would need to address that directly at the moment.

What is the desire from CDC/NIOSH for ODH? 80% chance that a "convenience copy" might be the best way forward (because of limitations with PHIN/VADS that will persist for some foreseeable future).  But putting a code system into THO does not directly allow for FHIR terminology service API access, but it does allow the code system to be accessible to tx.fhir.org and therefore utilisable with IG publication tools.

IF - the TSG existed and IF having convenience copies of code systems were one of the services that TSG is requested to offer to the community, then this would be a smooth path to offer to ODH and NIOSH.  BUT we are not in that place at this time.

What we can do is to suggest to HL7 Staff that an SOU be developed with NIOSH for this; Genny to come back to us with a name and address to start the conversation.  Example SOU can be found at http://www.hl7.org/about/agreements.cfm?ref=nav

TopicExternal Code Systems ProcessCarmela (question)

Review and approve improved text for users to request a code system identifier DRAFT - Request an Identifier for an External Code System

Add to agenda joint with Vocab

TopicTerminology Services GroupReuben

TSC meeting 21-May-21 attended by CM, RD and JJ.  The Vocab WG co-chairs and HTA members have been working in an exploratory group with folk from the TSC for the last 6 months.  As a result, we have agreement that "terminology is different" and should not have a standard "product management group" and resulted in a draft mission and charter to present to the TSC, which was sent out to TSC members in advance and had received some comments.   We knew this would need significant negotiation with the TSC to take it forward so Reuben presented a small set of "problem statement" slides to the TSC.  The problem statement was quite hard hitting, but was in general accepted.  Ongoing concerns in the TSC seemed to us to be: the name of the group (!); the requirement for funding (which the TSC does not have and would have to go to the board); the governance structure was possibly challenging.  The point was made "It's fine to disagree....but what alternatives are you bringing to the table?"  The terminology folk were very clear that they are tired of the problem and they want a clear path to be able to fix.

We were very grateful for those members of the TSC that are fully conversant with the issues in the problem statement and were are fully supportive of the proposal. 

Soon after the meeting, Austin shared a follow up email, which is appreciated.  It will be circulated to the rest of the HTA.  It's content contained the following:

"The TSC agreed to bringing together interested TSC members and the current Terminology Exploratory Group to deal with the issues raised by TSC members. The most serious issues are:

• A clear mechanism for funding the terminology infrastructure as identified in the problem statement/proposal must be identified and proposed to HL7 Board. You have made it clear that funding for these activities is critical to success, and without a clear avenue for funding, the TSC won’t agree to establish this group. The representatives from the TSC will work with the exploratory group to help create a proposal for the Board. • Composition and scope of authority of the proposed group needs to be further discussed TSC members have serious concerns about the proposed composition, and the proposed scope of authority of the group."

The concern about "authority" most probably comes from the sense that the TSG is seeking "authority" to act (in a timely manner).  We were very clear we "need teeth" to address the current problem areas.  

Can we be offered a clear starting point: 1) full acceptance of the problem statement and 2) for the Mission and Charter, a clear statement which areas need to be further negotiated in order to take it forward to the board.  Then, a clear timescale for taking the agreed M and C to the board (which board meeting will be targeted) with an outline funding proposal.

Julie will draft a response for Austin and circulate to HTA members for a sort of eVote (in the next 24 hours if possible).

TopicExternal code system deprecation policyCarolAdd to agenda joint with Vocab
TopicTranslations of HL7 Terminology contentJuliePostponed
ManagementHTA meetingsJulieContinue with existing time slot - 21.00 UTC (8pm BST, 3pm ET) every second Wednesday

Action items