How to send SOGI data in Lab orders (and probalby results, too) to accommodate state legislation
In preparation for our Open ELR call this week (Thursday 3/24/2022 4 - 5 PM EDT):
On the HL7 Lab call on Friday (https://confluence.hl7.org/display/OO/2022-03-18+LAB) we discussed how to send SOGI data in Lab order messages and came up with a few options: https://confluence.hl7.org/pages/viewpage.action?pageId=104570923#SexualOrientation,GenderIdentity,AdministrativeSex,BirthSexetc-OptionsforOMLmessages
On the HL7 Lab call on Friday (https://confluence.hl7.org/display/OO/2022-03-18+LAB) we discussed how to send SOGI data in Lab order messages and came up with a few options: https://confluence.hl7.org/pages/viewpage.action?pageId=104570923#SexualOrientation,GenderIdentity,AdministrativeSex,BirthSexetc-OptionsforOMLmessages
That same page shows the discussions we had when CA rquired them to be included in ELR for COVID-19 above (we landed on sending them as AOEs with the OBR for the test they belong to). There is a lot of work going on at HL7 under the Gender Harmony Project (https://confluence.hl7.org/display/VOC/The+Gender+Harmony+Project) - they are trying to ensure that this data is properly represented in ANY of the HL7 product families, including v2 (lab messags) CDA (eCR) and FHIR (eCR and future connections for lots of use cases); the current proposal for v2 is linked from the lab call minutes page, but also here for ease (https://confluence.hl7.org/download/attachments/76152954/SOGI%20proposal%20updated%2020211212.docx?api=v2).
The goal is to have ONE WAY for all PHAs SOGI data requirements and at the same time minimize any re-work that has to happen, if legislation is effective BEFORE the final solution has been fully vetted through HL7 ballot and publication (like in NJ).
Please review and come with your thoughts and feedback.
Talk to you all Thursday at 4PM ET!
Conference Line Details:
Thank you!
Also if anyone from New Jersey can share the proposed SOGI legislation that would be great.
Does anyone have a summary slide on sex at birth, gender, gender identity to share?
thanks!
Carmen
Carmen Pugh, MT (ASCP)
State Reporting Program Manager
National Office of Quality
128 Maple Avenue
Burlington, NC 27215
labcorp.com<http://www.labcorp.com/>
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Carmen
Carmen Pugh, MT (ASCP)
State Reporting Program Manager
National Office of Quality
128 Maple Avenue
Burlington, NC 27215
labcorp.com<http://www.labcorp.com/>
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Important Warning: This email and any files transmitted with it may contain CONFIDENTIAL information, including PRIVATE AND CONFIDENTIAL HEALTH INFORMATION which is intended for the use of the person to whom it is addressed. If the reader of this email/attachment is not the intended recipient, you are hereby notified that any dissemination, distribution, reproduction, reading, or copying of this information is STRICTLY PROHIBITED. If you have received this email in error, please delete the related email and all attachments and notify the sender immediately (by reply email) and/or the Labcorp Privacy Officer at privacyofficer@labcorp.com<mailto:privacyofficer@labcorp.com> or by phone at (877)23-HIPAA / (877) 234-4722.
I can try to pull something together that is shareable later...
Nancy
Any time the standard HL7 message is modified (by adding fields or “pre-adopting” something from a different message) this creates a large impact on every facility and system that uses that message.
Any change to the format of the HL7 message requires modifying every message definition and mapper in our integration engine as well as modifying both the source and destination systems. In Idaho’s case this will require modifying over 200 Rhapsody mappers as well as obtaining and implementing updated LIMS and Surveillance systems. This also requires a substantial testing effort to ensure that the changes have not impacted or broken anything. I presume that the SOGI information will also need to be sent to CDC so again, if there is a message format change, this will require changes to MVPS and re-validation of messages being sent there.
I understand that these directives have to be accommodated but we have to make ever effort possible to accommodate them within the standard message format.
Thank You
Robb
The issue was that this data may become required for other use cases, besides lab, and then the OBRs won't work.
The reason the V2 Management group thinks this should work is because per section 2.6.1 if you get data (fields or segments) that you are not expecting you should be able to ignore them..
I do recognize that these decisions are really critical for health departments that need to figure out how they will or will not try to develop ways to map and ingest the data into their surveillance systems.
Also I wonder if we should be commenting on USCDI v3 about these variables since if the data are not captured in the EHR systems and labs in ways that will feed into the ELR messages while maintaining data validity then we will not move forward in this space and just have a big mess. This is where we REALLY need to connect the data collection at health care orgs and labs with the standards used for public health reporting, holistically. I think the conversation probably needs to be broader than just what is happening at HL7 though I realize public health theoretically could participate there but in practice - esp with pandemic - does not really have the time to do so on a regular basis. I should mention that CSTE is about to put out an RFP for someone to help us in gathering input and providing it into standards like this one. So hopefully this will get better. Sorry for long-winded post!
the slides had a list of all the calls where SOGI topic has been discussed, but I have summarized here the most important ones for the rest of this week:
The majority of this conversation in the long run happens on the Gender Harmony calls Mondays 4 - 5:30 PM ET - Call info: https://zoom.us/j/7183806281?pwd=WHVnUUlkWWhhcnRaYk9sWWQyOEkvUT09 | Meeting ID: 718 380 6281 Password: 370553 | Search local number: https://zoom.us/u/aciVC9RrJ6
The lab specific conversations happen on Fridays 1 - 2 PM ET on the OO Lab calls: - call info: https://zoom.us/j/5100467805 | Meeting ID: 510 046 7805
One tap mobile: +19294362866,,5100467805# US (New York) or +13126266799,,5100467805# US (Chicago)
As far as HL7 process: normally this would be handled via balloting, but the timeframe is too short, so I am thinking this will be an official notification from HQ about the short-term solution approved by the WGs that currently edit chapters in v2 base standard. The long-term solution will be balloted in Sept2022 cycle, and then any changes needed in the underlying v2 base probably in Jan 2023 or May 2023 cycle and then published about 3 months after that, as long as there are not substnative changes from teh ballot comment resolution, forcing it to go back to ballot for another round. v2 Management Group may decide to limit that ballot to ONLY comments on that addition to reduce the chances of having to have a follow up ballot.
As far as USCDI V3 comments - the Gender Harmony group has prepared feedback and will submit that, but I agree it is critical that we get the vocabulary correct for that.
The Gnder Harmony project firmly believes that you should clearly differentiate between Sex for Clinical Use (and probalby not use Sex at Birth, unless that is defined as biological sex, rather than by what is listed on the birth certificate) AND Gender Identity.
Since USCDI is for US, I think the answers should be coded using SNOMED CT to ensure we can be semantically clear in differentiating between biological sex and gender identity.
I hope this helps,
Riki
Thank You
Robb
I asked around here at CTDPH and got several responses all of which amounted to - it's being discussed but not determined yet.
CDC Population Health Care Branch has proposed an optional model for the BRFSS that includes:
MOD26_1A. Module 26: Sexual Orientation and Gender Identity (SOGI)
We are not currently collection SOGI on birth or death records. Our Immunization System vendor, Envision, is going to have a call with their user groups - SOGI Discovery Sessions (Envision is on the HL7 advisory meetings). For Immunization this is not being reported from EHRs in their HL7. There was a Committee on National Statistics Public Seminars on April 4 that our Health Stats group missed but they are getting the recording. There is a consensus report published that I have not seen yet.
1. There is a lot of activity going on in different realms that do not seem to be coordinated - or if they are, we in the PHAs aren't aware of all of these. So are different recommendations going to come from different places?
2. Per Robb's point, any change causes a ripple effect in the systems. And since we seem to be pre-adopting at a rapid rate, when do we just stop the piecemeal additions and go to a new ELR standard that can be adopted nationally and systematically?
3. Collecting this information is important for certain health or public health followup, but why from lab reports? We are now continuing to hold labs 'hostage' to require them to collect information that really should come from other sources. Sorry, but should one state push this when the efforts and interpretations do not seem to be effectively coordinated?
1. Adopt the most logical initial descriptions (NJ at a minimum or the BRFSS seem good) to code but have the ability to add additional more specific codes (child codes) as needed. I mean developing the SNOMED codes for this.
2. Adopt in a fashion that can be used by reporting from EHRs whether in CDA, VXU, ADT or other messaging as well as in the ORU messages.
3. For ELR, adopt in a way that will have least impact on states who choose not to use this information from ELR.
4. The NJ act says "labs licensed by the NJ Dept Health" - I'd like to know the impact for labs not based in NJ - its my ignorance but do commercial labs have to license in each state or just the state their operations are based in?
What can CSTE do to help on this?
Licensing in PA is required for any lab, in any state or territory. We continue to find labs conducting testing which are not licensed and have to pursue those as they are identified.
Labs need to push back on this as the impacts are mainly on their business and systems. State impacts are going to vary because if unsanctioned data begins coming in our workflows are at risk of errors. For PA, if the data is sent as AOE as one example, we must make changes to our process or we will have large numbers of errored messages that will have to be manually addressed. We cannot ignore the presence of the data in an ELR, we have to triage the format/content whether we consume the data into a PA-NEDSS report or not.
In contrast to the CDC Population Health Care Branch proposal, Oregon currently frames SOGI in the following manner:
Any changes going forward will be clearly identified in a revision log at the top of the page.
I hope this helps. Please look for the September ballot cycle as we will be balloting the LONG term solution for v2.9.1.
Riki
Will labs be letting states know when they start including SOGI? I can put this on the extended ELR question list also.