State of Washington Race Values Request

[lizzieamanning]

Goal Between RS and SR, there are various slack threads and we’ve all had separate convos about Washington’s request to expand race/ethnicity/language fields. We need to determine how to handle Washington’s request to add 72 new race/ethnicity categories, knowing that's outside of the National Standard and could create difficulties with states that aren't ready to accept additional values.

Background Request from WA: Add 72 new race/ethnicity categories, as shown on page 2 of the PDF created by the WA State Health Board Washington State COVID-19 Point of Care Test Result Report Form

• WA is also asking for us to report multiple values for race when a patient identifies as such which is something we can’t currently do with our current internal format.

• Washington has added things that are NOT in the national standard

• WA said that they are happy to receive anything from the full HL7v3/FHIR list but since their values do not align exactly they have created local codes for the missing values.

Research ask

• Mike Judd: Initiate a plan for a lightweight user research campaign with STLTs to establish minimally viable evidence to understand how this may impact our end users (facilities themselves), since the facilities are usually tied back to regulations in their state. Separately, it was suggested that RS take an action item to understand where end users would accept it, so we can cover the research from both angles.

• Mike did say the SimpleReport and ReportStream research didn’t have to happen in tandem (since RS does have a lot going on right now, so when Mike/SR PMs were chatting they weren’t sure what kind of time constraints RS would have)

• SR PMs: I think the goal of this research should be to understand if there might be a consensus among states in expanding the accepted values for race and language values.

See this doc for running notes

Approach

1. Is survey of states to determine what race/ethnicity values they currently accept possible?
   PRA implications. We’d need approval. We can see if this would fall under PRA USDS they already got approved. RS got a PRA for customer satisfaction.

2. Talk to Megan Light

3. Attend an ELR open call? Good way to get word out if we decided to send survey and get ppl’s initial thoughts

Assumptions

Out-of-scope

Dependencies and risks

Open questions

Links & resources

• Shared-simple-report-universal-pipeline slack thread Nava link

• Washington State COVID-19 Point of Care Test Result Report Form

• ELR Appendix Guidance Value lists, December 2022 (XSLX) WA posted a crosswalk between the WA list and the national standards

• Comparison WA Race Values with HL7 v3 Value Set Race Brick Green did a comparison between the value set provided by WA and the HL7v3/FHIR race valueset. There are a few big issues including values missing from the HL7 set and clashes where multiple values in WA map to a single value in HL7.

• HL& v3 Value Set Race

We will be successful if...

[lizzieamanning]

For Megan: Provide info, potential solution, then a clear question

[lizzieamanning]

Brandon: multi-select for this WA issue, but include more about the WHY

[lizzieamanning]

@brandonnava can you spell out the "multi-select for WA" solution?

[lizzieamanning]

@brandonnava additionally, do we need to determine how STLTs handle data that is outside of the standard (like WA's)?

[brandonnava]

Yes so WA had to main concerns. 1) Our current selection doesn't encompass all the many identities WA recognizes (I wanna say the list is 80+) and 2) It doesn't recognize people of multiple race.

The multi-select solution is to solve the 2nd concern and act as a compromise on the first in that we would allow you to select multiple races from our current list.

WA is the only STLT that has brought up an issue like this so I don't think we need to investigate if other STLTs are running into a similar issue.

@brick-green do we still think multi-select is a viable solution? Would it create its own set of problems in how we parse/store data?

[brick-green]

The biggest issue I see with multi-select is with tests that should be reported to multiple jurisdictions. If a person lives in WA but gets tested in OR then that result should be reported to both states. If we were to offer multi-select then the WA reporting would work fine. But if OR only expects one value for race, then how do we choose which value to send from the selections made by the patient? We can't choose the first selected, or the first alphabetically because that would be a misrepresentation of the patient's choice. The other option case is to set race as unknown. But that's a bad option too as it also misrepresents the patients choice.

[brandonnava]

Update: looks like the CDC will be updating the codes April 1 per these meeting notes and that more race options as well as multi select are on the docket: https://docs.google.com/document/d/1e31tPikXjb-nAzFmTIwFfEzEnoNMDGHQGb8m3Ot3cOg/edit?usp=sharing

@brick-green Is this new work we will need to take on or will another CDC team be implementing? And any idea of a timeline we can tell Washington? cc: @LaFreda1